Archive for the ‘Thoughts’ Category
Quality of Life and Special Needs: Who gets to define Quality?
Quality of Life and Special Needs: Who gets to define Quality?
Who does Scripture say should defend the “special needs” parts of the body of Christ?
Every Life Matters
Rev. Stephanie C. Holmes, MA BCCC
Certified Autism Specialist
I try not to get preachy. I really do. But when I hear stories about parents killing their special needs children or petitioning a court to allow them to starve a special needs child, I cannot hold my tongue. I have had to lessen the amount of news I watch because I simply cannot bear the stories of how a parent or caregiver killed or attempted to kill a special needs child- usually an autistic child. But the story that has upset me the most is about a parent petitioning a court to starve their special needs child. The court argued the child does not have “quality of life”, therefore the mother’s actions are loving and kind. (http://liveactionnews.org/mother-wins-case-to-kill-her-disabled-daughter/.) This incident occurred in the UK, but as Americans we are naïve to think that this could not happen in the USA. “The only thing necessary for the triumph of evil is for good men to do nothing.” –Edmund Burke
That story in the UK brings up a vital issue that needs to be examined in the light of our Christian faith. Who decides what life is important? Who decides what life is viable? Who decides what life has value and what life is not valuable? Are we all made in the image of God, or just some of us? In this country we are hearing about certain lives mattering- do all lives matter or just some? Are we all created equal, or is that just a quote in a document? This debate is upon us here in the USA and how will we as Christian therapists and counselors stand on the matter? Google topics on parents killing or attempting to kill an autistic or special needs child and watch how quickly the search engine finds you countless articles such as these:
http://www.kidspot.com.au/a-little-girl-allowed-to-die/
These articles represent but just a few of the stories that occurred in 2014. I am not sitting in judgment of the parents, but I want to raise awareness that there are challenges to rearing a special needs child and in most cases it will be a life long journey. In these cases it was the parent or caregiver making the decision that the child’s life would not have “quality” or worse that the child’s existence affected their (the parent or caregiver’s) “quality of life.”
What does Scripture say?
Genesis 1:27 – So God created man in his [own] image, in the image of God created he him; male and female created he them.
Malachi 2:10 – Have we not all one father? hath not one God created us? why do we deal treacherously every man against his brother, by profaning the covenant of our fathers?
Isaiah 44:24 – Thus saith the LORD, thy redeemer, and he that formed thee from the womb, I [am] the LORD that maketh all [things]; that stretcheth forth the heavens alone; that spreadeth abroad the earth by myself;
1 John 3:16 – Hereby perceive we the love [of God], because he laid down his life for us: and we ought to lay down [our] lives for the brethren.
Ephesians 4:5 – One Lord, one faith, one baptism,
Galatians 3:28 – There is neither Jew nor Greek, there is neither bond nor free, there is neither male nor female: for ye are all one in Christ Jesus.
1 Corinthians 12:13 – For by one Spirit are we all baptized into one body, whether [we be] Jews or Gentiles, whether [we be] bond or free; and have been all made to drink into one Spirit.
Ecclesiastes 11:5
As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, the Maker of all things.
Isaiah 44:24
“This is what the LORD says– your Redeemer, who formed you in the womb: I am the LORD, the Maker of all things, who stretches out the heavens, who spreads out the earth by myself,
Psalm 139:13-14
13For You formed my inward parts; You wove me in my mother’s womb. 14I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. 15My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth;…
The story in the UK shook me to the core. Our family often engages in “worldview” discussions during dinner. Topics include news stories or movies to get our children thinking about the implications of those events and the repercussions they may have.
Both of my children have been classified as special needs at some point in their life. My youngest had hearing loss and speech issues and was diagnosed at age 3 with PDDNOS and mild ADD. Before her testing we were very concerned she was mentally challenged due to her inability to speak and respond. My oldest is diagnosed with Asperger’s Syndrome and mild OCD so I wanted to hear their response to the story. My youngest said “What if someone would have made a decision about me when I was younger when I had my issues?” This child now has no learning issues, still has mild ADD, and is in the gifted program at school. There was no way to know that would be her course in life at the age of 3. So this raises the question by what age should a viable person be able to contribute to society in order for them to have quality of life? She endured surgeries, treatment and therapy to help her get back on track developmentally. My oldest said, “Woah, who gets to decide what ‘contributing to society means’ and who would get to decide what special needs deem a person’s life as ‘not having quality’.” Good question. We already offer screenings in this country for Down’s syndrome and other issues. Those results give women the option to terminate their pregnancy so they do not bring such a child into this world. Another article that got me thinking on this subject was this quote: By 2025, half the children born in the United States will be diagnosed with autism, says Dr. Stephanie Seneff, a senior research scientist at the MIT Computer Science and Artificial Intelligence Laboratory. (http://www.medicaldaily.com/autism-rates-increase-2025-glyphosate-herbicide-may-be-responsible-future-half-316388)
If indeed half of our children were diagnosed with ASD, that would be a huge increase of cost for care, education, unemployment, disability etc. Who would be helping with that cost? Tax payers. Would there be an outcry that certain people are too costly to keep alive? It was not even a hundred years ago that Hitler’s decision to practice eugenics on a race of people AND a class of people occurred. We often forget that Hitler first experimented and eliminated German citizens with mental or physical disabilities. Those he felt should not “breed” or could not contribute to society.
That would never happen in this country? It already did, in the 1920s Margaret Sanger, of Planned Parenthood, founded the organization for the purpose of eliminating those who were deemed inferior. She had a very broad view of those considered inferior based on race, intelligence, and disability. http://www.dianedew.com/sanger.htm
On blacks, immigrants and indigents:
“…human weeds,’ ‘reckless breeders,’ ‘spawning… human beings who never should have been born.” Margaret Sanger, Pivot of Civilization, referring to immigrants and poor people
On sterilization & racial purification:
Sanger believed that, for the purpose of racial “purification,” couples should be rewarded who chose sterilization. Birth Control in America, The Career of Margaret Sanger, by David Kennedy, p. 117, quoting a 1923 Sanger speech.
On the right of married couples to bear children:
Couples should be required to submit applications to have a child, she wrote in her “Plan for Peace.” Birth Control Review, April 1932
On the purpose of birth control:
The purpose in promoting birth control was “to create a race of thoroughbreds,” she wrote in the Birth Control Review, Nov. 1921 (p. 2)
On the rights of the handicapped and mentally ill, and racial minorities:
“More children from the fit, less from the unfit — that is the chief aim of birth control.” Birth Control Review, May 1919, p. 12
On the extermination of blacks:
“We do not want word to go out that we want to exterminate the Negro population,” she said, “if it ever occurs to any of their more rebellious members.” Woman’s Body, Woman’s Right: A Social History of Birth Control in America, by Linda Gordon
On respecting the rights of the mentally ill:
In her “Plan for Peace,” Sanger outlined her strategy for eradication of those she deemed “feebleminded.” Among the steps included in her evil scheme were immigration restrictions; compulsory sterilization; segregation to a lifetime of farm work; etc. Birth Control Review, April 1932, p. 107
Today we are not as ruthless as Sanger in the techniques to eliminate those deemed without “quality of life” or those “unable to contribute to society” but the use and practice of medicine and science can be used to keep them from being born. I fear eventually those with disabilities, the chronically ill, either physically or mentally, or the elderly will be deemed simply too expensive to care for.
Those without a voice on the issue need us to stand up on their behalf. We need to speak out. Every created life matters and is here on this earth for purpose. As I say in seminars there is no exclusion clause in Jeremiah 29: 11 “11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Just because you can determine that plan doesn’t mean it is non-existent.
I am sure you have concluded that my opinion, based on my understanding of Scripture, is that every life is created in God’s image and there is no exclusion for race, gender, creed, sexuality, socioeconomic status, religion, abilities, disabilities, addiction, choice of sin or other reason here. Persons matter. We are ALL created in the Image of God.
Treatment Resistant Anorexia or Asperger’s?
Complex Cases: Treatment Resistant Anorexia or Asperger’s?
Stephanie C. Holmes, MA Certified Autism Specialist and Interview
with Dr. Tony Attwood World Renowned Asperger/ASD Expert.
I recently had a wonderful opportunity to interview world renowned Asperger’s Syndrome expert, Dr. Tony Attwood who resides and practices in Brisbane, Australia, for an article in Autism Digest that was printed fall of 2014 on Spectrum Teens. Dr. Attwood and I discussed issues of growing concern in the Spectrum Teen community and concern that clinicians may not be aware of when working with this population.
Founding editor of the European Child and Adolescent Psychiatry, Professor Gillberg, said eating disorders, specifically anorexia nervosa, is a huge concern in Aspie/Spectrum females. Gillberg’s research suggests that in many cases counting calories, obsession with exercise, or foods the client will or will not eat are often part of the “restricted or repetitive pattern” criteria for ASD. Attwood said, “Traditionally, family and group therapies are the treatments for choice in typical anorexia but for a person with Asperger’s Syndrome struggling with what appears to be anorexia, these treatments simply will not work.” Gillberg’s research suggests that if a client who has been diagnosed as anorexic appears to be resisting traditional treatment, it is plausible to consider the client may have undiagnosed Asperger’s Syndrome/ASD. Therefore, one to one cognitive-behavorial therapy is more effective to break about the rules and obsessions with food or calorie counting.
It is important to note the current rate of ASD diagnosis of males to females is 10:1. Leading experts such as Attwood, Gillberg, Baker and others, believe Aspie girls are being missed and the ratio is closer to 4:1. In August of 2013, research by Autism Research Center at the University of Cambridge used MRIs to compare male and female ASD brains. Some notable results of the study include:
- “As expected the tests found that the brain anatomies of females with autism were substantially different when compared to the brains of their male counterparts. In fact a completely different set of regions were implicated in the male autism brain than in female autism brains.”
- “In terms of brain morphology, females with autism look more alike to typical developing males when compared to typical developing females.”
- “So the brain change in females [with ASD] are actually shifting toward typical developing males.”
However, just because a female may be less conspicuous in her symptomology does not mean that she struggles less in adolescence than her male counterparts. Research is showing a rise of anorexia among ASD females. With ASD there is already some sensitivities around food: to its smell, texture, color etc. However, Dt. Attwood points out that an Aspie female may have a “special or restricted interest” in food and/or calories and it could appear to be “typical anorexia” but if the anorexia seems to be treatment resistant, there is cause to think that female may have Asperger’s with a “restricted interest” focused on food. In an effort to fit in, the Spectrum female may arrive to an irrational though that if only I was thinner I would be more popular with my peer group. Dr. Attwood said, “Remember, Aspies NEVER do things in halves.” So what can begin with efforts to be thinner can quickly turn to a restrictive interest in food, calorie count, etc. To Dr. Attwood and researchers, this is a manifestation of anxiety in the form of food as a special interest. Dr. Attwood said, “Usual treatment for anorexia is group therapy or a group home or family sessions, but if the female is Aspie this style of therapy will not work and it would be easy to assume the anorexia is treatment resistant.” Spectrum females are not going to get the same help from groups because their motivation, their focus for the starvation is different than their neuro-typical peers. Dr. Attwood said if the female is on the spectrum, an individual approach to therapy with a logical cognitive- behaviorial approach is the best approach for those individuals that seem not to be responding to traditional treatment.
Another area of concern that can be quite the political hot- topic, is gender identity issues among Spectrum Teens. You may be aware there are states that have laws concerning counselors addressing gender issues with a person under the age of 18. Dr. Attwood stated that research is showing there is a high probability of gender confusion issues with Spectrum Teens but it is qualitatively different than what we tend to think of as clinicians as “gender issues.” Because persons on the spectrum tend to be isolated and rejected by their peers, spectrum teens are at higher risk for clinical anxiety, depression, and self –esteem issues. Females on the spectrum tend to be bullied or humiliated by NT female peers. As discussed before, one option might be to become thinner and develop the restrictive interest in food as a way to “fit in”, but if the spectrum does not seem to be able to fit in she may think, “If I were a boy I would not be bullied so much if I could just be a boy.” Remember, the ASD female brain tends to be wired more like a neuro-typical male and she finds it easier to fit it and socialize with males instead of understanding the fickle nature of NT females. Spectrum males are in part also bullied, teased, harassed most by NT males. Spectrum males tend to find it easier to find acceptance with NT females. These spectrum males may develop a restricted interest in all things female believing “If I became a girl I would be more popular and have better social skills.” Dr Attwood encourages clinicians, “Be aware that there are different pathways to the same profile. See if the Aspie teen may believe that if they change their gender or identity it would solve all of their social problems.” So it is of great concern that spectrum teens tend to be naïve, tend not to understand who can be trusted, and if a peer group such as a gay/lesbian/transgender group were more accepting of them it would be easier for them to believe that they too have “gender confusion.” The motivation and treatment is again logical, cognitive style therapy to help the Spectrum teen identity irrational thoughts about changing gender to solve all social problems.
Spectrum persons tend to realize they are different and aware of their social difficulties in adolescence. Adolescence is a challenging time whether or not you have Autism Spectrum Disorder/Asperger’s, but Spectrum teens certainly have a few more challenges to face during this already tumultuous stage of life. Dr. Attwood stated, “First of all, we must remember that those with Asperger’s (ASD) do not have an illness or disease from which they suffer. There are not stomach aches or headaches or physical symptoms as such to cause suffering. Those with Asperger’s {ASD} suffer most because of peer groups around them. Neuro-typical teenagers are toxic creatures. Teenagers are toxic to mental health. The suffering endured is not because of Asperger’s {ASD} it is because of the attitude and degradation of others in the peer group.”
Spectrum teens find solace and relief from anxiety in their restricted or sometimes called “special interest.” Females tend to be more aware of their social difficulties and confusion and may act out with anorexic behaviors, may have gender identity issues, or suffer in silence. Barabara T. Doyle wrote about dealing with dangerous special interests for John Hopkins School of Education: http://education.jhu.edu/PD/newhorizons/Exceptional%20Learners/Autism/Articles/Working%20with%20Restrictive%20and%20Repetitive%20Interests/. If another person becomes an unhealthy object of an Aspie’s special interest such as a romantic interest there may be reason to be concerned.
Females may be more prone to Jennifer O-Toole, speaker and author, gives warning that Aspie females are more likely to be involved in a relationship of domestic violence. If the Aspie female wants to fit in and is desperate to find a boyfriend for some means of acceptance, she is susceptible for find Mr. Wrong and getting involved in a dangerous dating situation with her naivety and lack of perception of danger. Jennifer said to therapists, “If you have a female client who has struggle with or struggles with anorexia, and has a history or violent or abusive dating relationships, and has clinical anxiety or depression, you may want to consider she has Asperger’s syndrome.”
As American therapists we certainly need to abide by criteria of the DSM-5 for diagnosis, but experts around the world who still use the terminology “Asperger’s” are providing excellent research materials to help identify these individuals so that we can give them the best care and treatment. As Christian therapists we need to educate our community and churches about accepting people with differences such as Asperger’s/ASD so that the church/Chistian community can be a healing balm to those who not suffer with ASD but suffer from rejection and isolation in the world.
***This article appears in the soon to be released book by Stephanie C. Holmes Confessions of a Christian Counselor: How Infertility and Autism Grew my Faith. To be released by Highway51 Publishers in Fall of 2015.
Complex Cases: Aspie- NT Marriage: Cassandra Phenomenon
Complex Cases: Aspie- NT Marriage
Cassandra Phenomenon Ongoing Traumatic Relationship Syndrome
By Rev Stephanie C. Holmes, MA, BCCC
Certified Autism Specialist
As my work with Aspie- NT couples has expanded now across the US and other countries as a consultant, coach, or counselor, it is becoming clear to me that the Aspie- NT couple phenomenon is growing in numbers and there is not significant growth in understanding and working with couples with this unique dynamic among secular or Christian counselors. I receive emails or Skype contacts usually by a wife (in most cases who is the “neuro-typical”/NT) who is desperate for help because a child is diagnosed or suspected of Autism Spectrum Disorder (ASD/ Asperger’s/High Functioning Autism) and perhaps, just perhaps her husband is as well. Current CDC statistics report in 2015 the rate of ASD is 1 out of 68 children. As children are being diagnosed, it is becoming a common issue that a parent (usually, but not always, the father) becomes suspected of being on the spectrum as well. As some spouses say it, “I think my husband may have a touch of this” or “I am not sure if he has all the traits but the diagnoses explains…..” Usually, my first email contact the spouse asks the question “Is this Narcissism or Asperger’s/ASD?” (This question is addressed in a previous AACC blog NPD or ASD). Since the word “Asperger’s Syndrome” did come upon the scene until 1994 does that mean it did not exist before 1994? Certainly not. So, what about persons who met the criteria, but well before 1994? Those individuals would be adults presently and often married and had children.
As I was perusing sites about Aspie- NT marriage what is becoming clear and unsettling to me is an “US vs. THEM” mentality (NT vs. ASD). Blogs or sites that lean more heavily toward Aspie support can be quite harsh or terse about blaming the NT’s as the results of all the issues that perplex or confuse or traumatize the Aspie person. Sites that lean more heavily toward support of the NT can be quite vicious, cruel, demeaning, or paint a picture of hopelessness for any kind of marital satisfaction with someone with ASD, or an Aspie. Let me be crystal clear that neither side is creating an accurate picture. I also want to address this “US vs. THEM” in a two part series. This one will focus on the NT spouse and the next will focus on Aspie/ASD issues in marriage as to give equal time to issues creating challenges and sometimes psychological trauma (for one or both spouses) in this complex marriage situation.
For those who are reading my work for the first time, please know I am the not just a counselor/therapist who works with persons on the spectrum, I am the mother of someone on the spectrum and desire to write from both perspectives as I am NT but deeply love and advocate for my own Aspie/ASD child. However, today I want to address some issues from the NT perspective, in discussing what is being called “Cassandra Phenomenon” or “Ongoing Traumatic Relationship Syndrome.” Disclaimer: I am NOT saying that living with a person on the spectrum will automatically cause OTRS but there are challenges and stressors that come with daily living in a spectrum household. My desire is not to offend or disrespect Spectrum persons but to build an understanding of some challenges in the Aspie- NT marriage. This article will reflect more on the NT perspective.
What is Cassandra Phenomenon or OTRS? This term was coined by Families of Adults Affected by Asperger’s Syndrome (http://faaas.org/otrscp/) and their site can provide more detail for the history of the name. However, in Greek mythology the basic story of Cassandra was that Apollo gave her the gift of prophecy and foreseeing the future out of an act to seduce her and when she rejected him by spitting upon him he cursed her with a curse of never being believed. Cassandra then had the power to accurately predict the future and would warn and educate about something about to happen but because of the curse would be dismissed, rejected, or disregarded. The event would come to pass again and again but the curse of never being believed would be the never ending source of her pain and frustration in life. (She had forewarned her people about the Trojan horse and was dismissed). The townspeople saw her as insane, mad, a liar, and eventually living between this gift and curse ultimately drives her to complete insanity accompanied by incarceration. Therefore, spouses and parents in a spectrum household identify with this conflict. Let me reflect on a personal experience with my child and the education system.
Although there are countless stories for me to draw upon, the most vivid involves a situation with my daughter’s first 3rd grade teacher. My daughter was diagnosed, she had a IEP (Individualized Education Plan) in place, and I was meeting with the teacher before the start of the school year to discuss my daughter’s school supplies and where my daughter should be placed for seating (preferential seating as described in the IEP). This teacher had a rule first of all about school supplies. All students would use the same supplies, they would not be individually owned but shared by the community, and all supplies would be the exact color, size, style, shape etc. despite any child having a learning need, issue, or challenge. This was issue one. My daughter is sensory aversive and using metal handled scissors is a source of discomfort and frustration for her. I begged and pleaded on her behalf first of all for her to keep her supplies in her desk because Aspies do form attachment to their objects, have difficulty sharing, and some of her supplies needed to be different due to her sensory challenges. Specifically, her scissors needed to have a rubber type padding on them and her favorite color is blue. This was request was denied. I asked the teacher to show me where she planned for my child to sit. She decided the preferential seat was the seat on the front row, opposite a student, and the desk was close to the exit door. This teacher had desks lined up in rows wherein desks faced each other, so students would be eye to eye, direct contact. There was an odd amount of desks and I found a desk that was alone without another desk directly in front of the desk placed on the front row but deeper into the room away from the exit door. My child had a history or running (out of the classroom) and a history or breaking her pencils and throwing them out of frustration when work was overwhelming or the pencil hurt her hand. I forewarned that it would be a possible scenario that she could escape the class (which later she did often) or if she was using those horrid metal handled scissors get frustrated and throw them and the risk would be it would hit the student seated in front of her. Out of her sensory issue, not mal intent, she would fling the scissors and not take into account there was another person seated in front of her. This was dismissed and the teacher maintained she was following the IEP and SHE chose the preferential seat. Within 3-4 weeks of the school, it happened.
The class was working on a cutting project, my daughter did not want to use the scissors, was forced to use them, she got frustrated and flung the scissors. The scissors (blunt edge) went flying by the ear of the student in front of her. The teacher demanded she apologize to the student, pick up the scissors, and resume work. My daughter, who saw in black and white, did not see a need to apologize for not hitting him with the scissors, did not want to finish the project and remained seated. An assistant was called in who immediately grabbed my daughter from her seat and attempted to force her to pick up the scissors. Surprised and scared about being picked up from behind, she hit the teacher and when he began to put her in a therapeutic hold she bit him trying to get out of the hold. The call comes to me that I need to pick up my daughter and she is suspended because she “assaulted a fellow student with scissors unprovoked, refused to apologize, and hit and bit the assistant for no reason.” This event eventually led to her being dismissed from the school and put temporarily into a secluded classroom because she was “too dangerous to be around mainstream students.” In attempting to plead my daughter’s case/advocate on her behalf and bring up I had forewarned this situation, and this was not entirely her fault, the fault was pinned on me. This entire situation could have been avoided if I had been heard. The school psychologist suggested to those present at the meeting, perhaps the mother has Munchausen’s by Proxy. From that point forward I would try to educate and forewarn and advise, but if the that school psychologist was there I was dismissed as mentally unstable- you know Munchausen’s by Proxy. This was a source of daily, weekly, monthly stress. When I miscarried several times in 2007, the doctors attributed the first to enormous stress levels, and the most stressful thing I dealt with was the school system and constantly not being believed and dismissed. They say her issue was behavioral and only required discipline but because the mom (me) was emotionally and mentally imbalanced I was causing this behavior and it was manifesting at school. This was also present at church, my daughter was usually delightful at church because she loved it as a child, but I would write up little manuals or guidelines for “what if” scenarios but often be told “She may do that at school or home but she never does that here.” On more than one occasion what I predicted would happen and the teacher would look at me disbelief and quickly dismiss I had predicted the outcome. This is extremely stressful. When you have knowledge and try to forewarn and prevent, then get rejected or dismissed, the stress of wondering when or where something will happen or waiting for that next call is unbearable.
In a marital situation, if the couple is 35 years old or older, more than likely the spouse presenting with ASD/Asperger’s is undiagnosed. Perhaps a child was diagnosed and then the NT spouse begins to learn about the syndrome/spectrum and see these same traits in her spouse. She begins to look back on the marriage in hindsight applying this syndrome to some pretty hurtful times where her husband maybe was inattentive, dismissive, or worse something happened that could have been prevented had he heeded her warning. She researches this and brings this up to her spouse and often the Aspie spouse quickly dismisses it. After all, he did marry, is usually pretty successful at his work/job, and he does not have a disability, in fact maybe you are the crazy one. You are the one who cries, gets emotionally upset, and I think you are negative and critical constantly bringing up things I supposedly do that hurts you. We do not need marital counseling, you need counseling. The pattern continues that the wife begins to read marital books and attends seminars, perhaps she needs to be a better wife. Maybe he is right that it is all in her head and she is negative and critical. She is feeling anxious or depressed and begins counseling. Counseling is not helping. She may decide she needs psychotropic medication to cope with her marriage/life because she feels disconnected with her husband, she feels he does not give empathy, she feels dismissed, they lack mutual interest of shared enjoyment, but maybe if she tries hard enough things will improve. She may try to discuss her feelings with friends who more than likely have NT husbands and they tell her their husbands do similar things (but trust me no- where near the level of the Aspie man) that she needs to pray harder, try harder, find ways to work on it. After all, the Aspie spouse usually presents to the public as docile, maybe quiet or naïve, they cannot imagine she would feel the pain of isolation and other challenges she is describing. She may seek spiritual counsel and the person tells her this is because she needs to be more submissive and respect her husband and she will find contentment and happiness. She has tried everything, counseling, talking, spiritual advice, something else seems amiss. She may get him to go marital counseling because she is not satisfied in marriage and she is feeling maybe like she is going crazy. Does she feel what she feels? Does she see what she sees? Is this normal? Does he have this Asperger thing or is she making it all up? If the marriage counselor is unfamiliar with ASD they usually see the Aspie presenting as quite calm and saying “You know I am quite content in this marriage but she is negative and critical and so emotional. I think she really needs the help.” The wife has been through years now of reading books, seminars, counseling, talking through this with friends and is presenting as anxious, depressed, discontent, and 9 out of 10 times marital counseling will be unsuccessful and things continue to spiral downward. Studies suggest between 70-90% of marriages that are Aspie- NT end in divorce. Hence, what the wife may be experiencing is Cassandra Phenomenon or OTRS.
To this side of the Aspie- NT equation it is important first off to validate the concerns and challenges of the NT spouse without a lot of advice giving. After seeing the couple together a time or two together I find it is better to do the majority of the work separately.
The NT spouse needs:
- Validation: It is very important for the NT spouse to have a safe place to vent and receive care, communication, being heard, and points of frustration understood.
- Realize that the NT spouse feels trapped, especially if he/she is a Christian. If there is not addiction/physical abuse/adultery the NT feels there is no way out or conflicted about wanting to terminate the relationship.
- The NT spouse will be conflicted about the diagnosis or possibility of the spouse having Asperger’s/ASD. To one point the diagnosis or possibility of a label validates that there are challenges, but since ASD is a permanent challenge there may be hopelessness that there can be anything to change in the marriage where the NT feels there will be fulfillment in the marriage. The NT spouse often feels there was a bait and switch. First of all they did not know they partner had ASD. Second, often times when the NT person is the object of the ASD person’s affection/obsession there is much more attention and time spent in the quest of the relationship in the courtship period. When the focus shifts after marriage, the NT partner is left wondering what happened to the person I dated and fell in love with? Why do they no longer pursue me?
- The spouse out of frustration may want the Aspie spouse “cured” or “fixed.” As a parent of an Aspie there is nothing to “fix”. There is a neurological wiring difference that serve that person well in other areas of life which does happen to challenge intimate relationships but the Asperger’s/ASD is not THE root of every problem. Be careful treading here. For mutual marital satisfaction each spouse will have to learn some compromise. Each spouse will need new communication tools and ways for each to satisfaction in the marriage. The NT spouse may be burned out/exhausted/ carrying years of hurt and frustration, be gentle and move slowly not placing all the responsibility of adaptation on the NT spouse. Aspie/ASD spouses if motivated can learn new skills, adapt and modify , but not “change.” Change is not a word that should be used as it is very offensive to the person on the spectrum.
- This is a process. The NT spouse has been long comparing the marriage possibly to a couple of two NTs. The dynamic of Aspie- NT is different marriage connection and one has to give up the dream of having a NT-NT marriage with an Aspie spouse. The marriage will be different but it does not have to be “less than” or “unfulfilling.”
- Unfortunately, Aspie spouses can lack motivation to change and being that they are not feeling as dissatisfied may have trouble getting started or making steady progress. This makes the NT spouse feel unimportant and lack security. It is important to help the Aspie spouse understand there are changes and adaptations to be made that he/she will not see as important or valid but in sacrifice to the one they love if they want the spouse to feel secure, connected, important will need to make some necessary adaptations and modifications.
Cognitive- Behavioral therapy is the main modality to use with the Aspie- NT couple. Modalities that focus on emoting or making the Aspie “feel” certain things will not be effective. Aspies will need to know the logical reasons and explanations of why you are asking them to do or modify certain things. A cognitive, rational approach with some reality therapy will be most effective. This is one side of the marriage equation. Next month we will look at the marital equation from the Aspie/ASD point of view.
I will also being teaching a track workshop at this year’s World Conference on Aspie- NT marriage.
Did DSM-5 get it right with ASD?
The long awaited updates to the DSM were released with great anticipation, even pomp and circumstance in May 2013. Even for clinicians, change is never easy. The changes in the DSM-5 are greatly applauded by some and criticized by others. Perhaps the loudest outcry came from the Autism/Asperger’s community, and I was one of those voices. There is good reason for the concern as it pertains to the diagnostic criteria of the new category broadly called Autism Spectrum Disorder in the DSM-5.
The clinical community who is tasked with revising the DSM is also given the responsibility of classifying and researching what symptoms make up a disorder or diagnosis which gives clinicians a common language for classifying and treating clients/patients. What this manual determines as the guidelines for diagnosis then impacts how insurance is billed and what services a person can receive in a school or job setting.
There are 2 major things that have upset clinicians and educators who work with persons on the spectrum. The first is the removal of PDDNOS and Asperger’s Syndrome. Scientific studies reviewing and researching the new diagnostic terms show that it is these two groups of individuals that seem to be excluded from the new criteria. This is primarily problematic in services to be received in the school setting. For those previously diagnosed with PDDNOS or Asperger’s who were receiving services in most places are “grand fathered in” to the ASD diagnosis and still receive services. The issue becomes the thousands who could have received services but now may be excluded with the new diagnostic criteria. The other major change that upsets those of who work primarily in this field is the change from 3 major criteria in DSM-IV-TR to two criteria in the DSM-5. In the previous manual there were three criteria in which to judge if a person showed autistic characteristics: social skills, communication, and repetitive or restricted behaviors. In the new manual there are now only two as social skills and communication have been combined into one criteria. That may seem subtle, but that is a big change. Also, in the DSM-5 there is a stricter criteria for what meets the standard of a repetitive or restrictive behavior. This is also problematic because how one demonstrates their restrictive behavior may be dependent on their temperament, home environment, access to therapies or help managing those behaviors.
The new manual did include a new diagnosis called Social (Pragmatic) Communication Disorder. It is thought many who previously qualified as Asperger’s Syndrome or maybe even PDDNOS might better fit in this diagnosis. Here is how the manual explains it for us:
“Individuals with autism spectrum disorder may only display the restricted/repetitive patterns of behavior, interests, and activities during the early developmental period, so a comprehensive history should be obtained. Current absence of symptoms would not preclude a diagnosis of autism spectrum disorder, if the restricted interests and repetitive behaviors were present in the past. A diagnosis of social (pragmatic) communication disorder should be considered only if the developmental history fails to reveal any evidence of restricted/repetitive patterns of behaviors, interests, or activities.”
So, the main difference is any developmental history of repetitive or restrictive behaviors. This can be problematic in getting a developmental history of a teenager or adult because often time higher functioning individuals may have learned to manage the behaviors or have “socially acceptable” ones like Bible-study, or rigid beliefs about morality, or cooking, or music composition. Not every restrictive interest is “autism stereotypical” as in interest in small parts, vehicles, rocks, or ceiling fans. Often times parents new to the process are not really sure what falls under that category because all kids as toddlers have some phase they are in- cars, Thomas the train, Elmo, fairies, racecars. Caregivers may not always know when the pattern has crossed over into restrictive or repetitive. Some parents, when I interact with their child and they tell me their child cannot be autistic because they do not have any of those “behaviors”, react when I point out behaviors I observe but the parent calls the behavior “quirky” or “just a phase every child has.” So the criteria language and what that manifests can be troublesome if the clinician does not have a trained eye on the whole spectrum of autism. If they stick to literal terms as to what may be repetitive and restrictive, since parents are giving the history, those behavior may be missed in the assessment.
Social communication and social skills are the same thing right? According to the DSM-5 yes, but according to those who work with these individuals there are nuances in one’s ability to communicate and one’s ability to know the right thing to do or say in the appropriate social situations. Often times those who were previously called Asperger’s tend to be able to hold wonderful conversations (if about their special interests ) and thus appear completely neuro-typical, but may not know how to interact with a group of people at the church banquet or work Christmas party.
Around the world the term Asperger’s is still being used and scientific studies abound that indicate it should still part of the spectrum as a distinctive sub-type. A study in the BMC Medicine journal which compared EEGs of neuro typical and Asperger Syndrome children found that “all the children with autism- including those with Asperger’s- showed weaker connections in language associated regions of the brain’s left hemisphere. However, the researchers found distinctively strong activity in other areas of the brain among those diagnosed with Asperger’s Syndrome.” The study showed these distinctively strong areas were not present in the normally developing child’s brain.
As a clinician and mother working in this field, I stay attentive to the research being done in other parts of the world concerning ASD/Asperger’s Syndrome. When I speak, although it is now “clinically incorrect” in the USA, in my humble opinion it is more accurate to still use the distinction of Asperger’s Syndrome. Organizations such as Emory Autism Center and Marcus Autism Center and TEACCH still use the term as well.
This article was certainly not meant to answer this heated debate, but to get one to look beyond the language of the DSM-5 as want to provide excellent care. I hope to have raised more questions than answers ad challenge us to look for truth wherever truth may be found and not be limited to one manual.
Are special needs kids targeted by bullies?
What if your child or client received a text or Facebook message that said, “You should just have one of your seizures and die” or “No one likes you, why don’t you just kill yourself?” Isn’t this just teasing? I hear parents and professional say, “Being bullied or teased is part of life, it makes you stronger.” Is that true? Who do bullies target and what are long-term effects of being bullied or socially isolated or rejected?
I was dumbfounded and shocked by the story of Shea Shaehan, an 18 year old student with the mental capacity of an eight year old, who received texts similar to that described above. Although I suppose I shouldn’t be, my own special needs daughter, as well many clients on the spectrum report bullying.
What is bullying anyway? The Office of Civil Rights (OCR) and Department of Justice (DOJ) state, “Bullying may be considered harassment when it is based on a student’s race, color, national origin, sex, disability, or religion.” Who do bullies target in general? Kidshealth. org said, “Bullies often pick on someone they think they can have power over. They might pick on kids who get upset easily or have trouble sticking up for themselves. Sometimes bullies pick on someone who is smarter than they are or different from them in some way.”
When in developmental study do you we know children start to look for personal identity? When do cliques and groups tend to form? What grades in school would none of us ever want to do again in life? Middle- school. Middle- school is the time bullying tends to escalate. Even neuro-typical kids struggle with issues of “Hey, we were friends in 5th grade, what happened to make us not friends in middle school?” That is a common issue. But for special needs children it is not just a separation of groups or cliques, it is often time they are targeted for bullying and harassment because of their differences.
How common is it really? According to National Bullying Prevention , statistics show 60% of students with disabilities report being bullied regularly as compared to only 25% of the average student body population. Dr. Tony Attwood said his studies show between 70-75% of teens on the spectrum report being bullied.
Why is bullying a big deal? What doesn’t kill us makes us stronger right? Isn’t that what we are taught?
A study called “The Impact of Bullying in Childhood on Adult, Health, Wealth, Crime, and Social Outcome” written by D. Wolke & W.E. Copeland and released in the journal Psychological Science this past October does not think it is simply a rite of passage adolescents go through. Their study found: “Victims of childhood bullying, including those that bullied others (bully-victims), were at increased risk of poor health, wealth, and social-relationship outcomes in adulthood even after we controlled for family hardship and childhood psychiatric disorders. Being bullied is not a harmless rite of passage but throws a long shadow over affected people’s lives. Interventions in childhood are likely to reduce long-term health and social costs.”
Some argue that a child or teen with a disability is already “set up” to feel different and already will struggle with anxiety or depression so how do we know bullying adds additional stress for negative outcome affects? Psych Central released an article last year by Dr. Rick Nauert in April of 2012 titled, “Special Needs Don’t Depress Kids- Being Bullied or Left Out Does.” The study by Margaret Ellis McKenna, M.D. revealed, “Being left out, ignored or bullied by their peers is the main reason kids with special needs report clinical levels of depression and anxiety.” Kids with various special needs including physical, mental, or behavioral were included in Dr. McKenna’s study. She found that most persons with disability will not report that the disability or transitions or challenges of the disability itself result in feelings of depression and anxiety and suicidal ideation, how others treat them because of the disability is the bigger factor.
As a mother, minister, and counselor who works with the autism community and others with special needs, I encourage you to openly ask and dialogue with special needs clients. We make many assumptions about how others different than us feel and react to things. We can simply ask. Based on the above studies we know that this population has a higher rate of bullying. We also know it has long-term negative effects. We know that between 50-60% in the autism community alone struggle with suicidal ideation and clinical depression due to reported bullying. If you google special needs and suicide or autism and suicide the list of stories of teens contemplating or committing suicide is on the rise. As therapist we can be proactive with this population I our care and ask. Familiarize yourself with your state and school district’s policies of bullying and reporting and preventing bullying.
What did we do? When our daughter was being bullied at school we followed the principle of Matthew 18:15-17. Before I jumped in and tried to save the day I wanted her to voice that is was not okay with her to the bully. I had her state to him that his behavior was not okay and name calling and threats would not be tolerated by her. When he continued, we met with her special education case manager and began to document what was happening and the classroom teacher was made aware. When this failed to stop the bullying I as the parent contacted the parents of the bully. I said that I did not wish for this to be a permanent record issue for him and perhaps they are not aware that bullying someone with a disability is not only, not tolerated by the school, it is a crime. The parents got involved and had their child avoid my child at school. The football player actually convinced his parents my spectrum daughter was bullying him. It became he said/she said, but I saw the affects of this bullying on my daughter. I saw her anxiety levels rising and her grades dropping in the class she had to see this boy in every day. The school was alerted, and had the parents not intervened we would have gone to the school and pressed formal charges. What happened next made me the proudest mother in the world. After the parents and I talked and we discussed the students should avoid contact with each other, my daughter amazed me. Inspired one day on the way to school by Matthew West’s song “Forgiveness” she approached her bully with hand outstretched and said something like this, “ I don’t know what I have done that may have made you not like me. If I have done something I am sorry. What I really want is to just have peace, can we start over and just live at peace at school?” They shook hands and ate lunch together that day. The teacher reported a change in atmosphere in the class, and my daughter’s focus was able to return to her academics. I was so proud that she “got it” that WWJD was not just a phrase or bracelet , she actually lived by it and did was Jesus would have done in that situation. It was that moment I knew her faith, was her faith. She owned it. She also felt empowered first to stand up to the bully, and then to have a “why can’t we all just get along” moment. He teases her some still, but the harassment and bullying has stopped. I wish all stories ended this way, but they do not. Countless of teens with special needs feel hopeless and do not know how to deal with bullying. We need to educate and empower them and their families. We need to show them we care and that God cares and they are people are value and worth, Christ died for us all Jew, Gentile, male, female, ‘neuro-typical’ and differently abled.
From One Aspie Parent to Another: It is OK to reach out for help!!
As I was driving my oldest daughter to high school today, I briefly reflected on those tumultuous years of elementary school where I was a slave to my cell phone looking every 5 minutes to see if the school would be calling me to come pick up my daughter- AGAIN! Those were not the best of the years. I thought back to the day of her first expulsion from kindergarten and the sinking feeling, that this behavior I was seeing could be that thing I learned about in graduate school- Asperger’s Syndrome. Even though I held a graduate degree in counseling and undergraduate degree in psychology, knowledge of the symptoms of a disorder does nothing to help one deal with and live with a life- long developmental disorder in your child. The thought was terrifying to me. The school system referred me to TEACCH. TEACCH was instrumental in diagnosing not only my oldest daughter with Asperger’s with mild OCD, but later my youngest daughter with PDDNOS and mild ADHD. TEACCH was a wealth of information to me when I was overwhelmed and was trying to educate myself on what to do to help my children. One of the biggest things TEACCH did for me was give me “permission” to reach out for support. I am an independent soul who tries to conquer the world on my own and asking for help is not in my repertoire of tools for coping. They told me to call the NC Autism Society for support and help with my daughter’s advocacy in the school system for an Individualized Education Plan (IEP). Why do I need help? I can do that on my own? Wrong!
This was one of the best decisions I made. I realized quickly that the school system took advantage of my lack of knowledge of the laws concerning disabilities in school and simply wanted to label her as a “conduct disordered” child and toss her in a BED/BEH (behavior focused classroom) and lock the door and throw away the key- so to speak. I was in over my head. I called the NC Autism Society and became and member and reached out for help and support. I have no idea why I was embarrassed to admit I needed help with a syndrome I knew nothing about, but I was. An advocate came with me to a crucial IEP meeting, and as she spoke and quoted laws and mandates and advocated for my child. I was so glad she was on my side! I was impressed. She fought to keep my child out of the secluded behavior-focused classroom and fought for us to get a shadow for my daughter. Not only that, but she came and did a demonstration in my daughter’s class to help the students better understand my daughter’s autism and her sensory needs to “normalize” some things for them at their age level when they might see her act out or throw a fit or have a public meltdown. The children who saw that demonstration NEVER bullied my child and seemed to give her grace when teachers and other adults could not. I have publicly mentioned NC Autism Society when I speak on ASD but never really thanked them, so please see this article as a word of thanks! You helped me, you supported me, you inspired me to do what I do now. I am an advocate and speaker from crowds in the 100s to 900s, anywhere I can find a soap box to stand on, you helped empower me to do for others what you did for me. So, as an ASD mom, and autism advocate, let me give you the reader permission to reach out! There are those of us who have been in the trenches longer and we want to help you. TEACCH and Autism Societies are a wealth of information and support. Do not wait, getting support is crucial.
Another piece of advice from my life and working in the trenches now for 9 years. EARLY DIAGNOSIS is key! Many times parents notice behaviors and people mention the autism label and many parents say “we just don’t want to label them” or “we think he or she will grow out of it” or “we don’t want them to feel different from the other kids.” Guess what! If your child is acting out at school or not excelling the school system is already giving them a label of either “conduct issue” or “lazy” or “he or she just wants their way.” Why not get the evaluation and get the right label. Your child already knows he or she is different, so why not celebrate that difference and get the proper label so that your child can get the help they need at school and other treatments and therapies. Occupational therapy, speech therapy, physical therapy, specialized diets, chelation, hippotherapy, vitamins and supplements, it can all be overwhelming but early intervention and finding the right protocol for your child will be a worth while investment.
Trust me, the school system is not your child’s advocate. You have to be. They do not always do “the right thing” because it is the right thing. With the help of TEACCH and NC Autism Society we fought for what my daughter needed and she is very successful today in a mainstream class in the gifted program in the public school system. So my three pieces of advice from life in the trenches: 1. Reach out for help; 2. Early diagnosis and therapies is crucial; 3. Advocate for your child and help them be as successful as they can be at whatever level they are on the spectrum. My daughter went from autism secluded classroom to mainstream with a shadow, to a behavior focused class, to home school, to a 2 teacher team in mainstream to regular mainstream class. There have been many struggles and trials but when I look at where she is now, I am so glad I had someone like TEACCH and NC Autism Society to point me in the right direction early on in her life and it has made all the difference in the world!
Asperger and Marriage: Therapy that Works
The area of Asperger’s (soon to be called Autism Spectrum Disorder) that is woefully behind in research and resources is on the subject of Aspie Marriages. Asperger’s and marriage? Wait a minute. I thought I was taught Aspies prefer solitude and do not usually seek out lifelong relationships. Maybe you have heard the myth that Aspies are somehow doomed to lives of “less than” when it comes to friendships or marital relationships. Since Asperger’s was first acknowledged in the DSM-IV in 1994, there has been an explosion of research and articles about raising someone on the spectrum, Aspies and school issues, and everything you need to know about social skills with Aspie kids. Guess what? Those early Aspies diagnosed in the 1990’s are not children any more. Many people with Asperger’s Syndrome did (and do) marry. What about people who had Aspie qualities before the 1990’s, before the term Asperger’s came on the therapy scene?
What are some blind spots of persons with Asperger’s that might challenge the marriage relationship? As you read the following you may think these things challenge ‘normal’ marriages. This would be true, but these specific areas in marriage tend to be exacerbated by a person who is on the spectrum: emotional intimacy, social skills, empathy skills, mind blindness, finances (money spent on special interests), and even verbal or physical aggression if a routine is blocked or something does not go as they thought it would.
Many people report that their first impression of an adult with Asperger’s Syndrome comes across with these commonly held misperceptions about Aspies. They are often called: selfish, cold, rude, stubborn, egotistical, uncaring, callous, and unsocial. The frustrating thing for those of us who love someone on the spectrum is we know these attributes are not true. Many times the Aspie is not even aware they are coming across to others that way. But, if a spouse interprets a behavior with one of these notions a marriage relationship could be greatly challenged.
As I reflect on recent contact from those who have had adult children and/or spouses with Asperger’s Syndrome, I am sad to report many were frustrated and hurt by the therapists simply because the therapist did not fully understand how Asperger’s impacts relationships. Many of the normal techniques and theories applied to marriage and family counseling are not as effective when applied to persons on the spectrum and often leave the clients confused and hurt.
Because of a late diagnosis in life and trying to understand more about who they are, more and more adults with Asperger’s are seeking counseling and usually the impetus for that search is related to marital or vocational stress as a result of some of the Aspie’s blind spots. Persons married to an Aspie are seeking help to better understand their Aspie spouse and strategies to live in peace while still having their own emotional needs met. This can be a tall order when the spouse is neurologically challenged in the area of empathy and intimacy. To further complicate the matter, it is not uncommon for the Aspie spouse to get the diagnosis later in life because of a child in diagnosis process of autism spectrum disorder. Sadly, divorce is becoming commonplace in Aspie marriages.
What modality tends to be the most successful for Aspie marriage counseling?
Aspies tend to stay cognitive. Issues of emotions concerning how others feel and interpreting events are a major issue for them because of mind blindness. (Mind blindness is sometimes called the opposite of empathy. It is the inability to understand how another may be feeling or processing emotions.) Aspies tend to be straight-forward people and they will not stay in therapy if they do not see how they will achieve results. Cognitive-Behavioral Therapy (CBT) with a little dose of explanation of Family Systems seems to be the most effective approach. Dr. Tony Attwood explained recently at a conference held in Atlanta, “These individuals rarely know how THEY feel most of the time, much less how others feel. They also tend to think others think like them. Asking them a question about how someone else might feel about that is a completely foreign concept to them.” Approaches that are emotionally based are frustrating and painful for Aspies; however, good, solid logic and explanation of consequences of various behaviors and how they affect the spouse and the family can reach their 1+1=2 mentality. Sharing stories or actual events are also usually effective. Remember, in children’s therapies, social stories are often used to teach children and adolescents new social skills. Sharing with Aspies stories of marital success and failures with practical guidelines on how to achieve success and avoid failure provide a road map to learn new strategies. Most Aspies are loyal and do seek to please the one they love, but many times are stuck on how to demonstrate their love or how their actions or words affect the other person.
What does not work? Role reversal strategies and re-enacting various scenes at home are not effective with Aspies. If you ask them “to think like their spouse” or “what would your spouse feel or think if you did that” or “how would you feel if that was said to you?” these questions make no sense to them. A good rule of thumb is if the strategy is to evoke an emotion in the Aspie spouse or to make them try to “think outside of themselves.” An adult I recently worked with explained it like this, “You know those cones of water that dump out at water parks? The cone is upside down and eventually is filled with water. One last drop enters the cone and the cone suddenly spills over and dumps the water on the head of the one underneath and then flips immediately back over to begin being filled again. That is how my emotions work. I am completely unaware that the emotion is filling up on inside. I am unaware when I am at a flipping over level. To my spouse she thinks that last little thing that set me off or turned me over was the trigger to the emotional meltdown, but the truth is I had no idea I was that stressed or upset until the last drop happened and it caused me to spill all the emotion out on her.” Work or other stressors could have been building for a month and one little thing said by a spouse triggered the verbal meltdown. The Aspie is then confused on how big the emotions seem to get so quickly and unaware that his reaction was hurtful to the spouse. He might respond something like this, “She should have known that was not directed at her. She shouldn’t get her feelings hurt so easy.” This is not typically a response the offended spouse wants to hear. Therefore, helping the Aspie learn how to monitor body and emotionally states is a huge skill that will help relieve this stress in their marriage. Helping them understand how their body tends to overact to fight, flight, and freeze responses is a useful tool to the Aspie. The Aspie is not usually aware of signals his or her body is giving them to indicate that they are experiencing a heightened emotion. Use of facial emotions and having the spouse show them what their face looks like at various times will help them understand what the spouse is experiencing. Aspies do not tend to see the signs of anxiety such as, racing heart, or sweaty palms, or being easily agitated as their autonomic nervous system is being aroused. It is a good idea to educate them about anxiety and teach techniques that can reduce anxiety. The spouse of the Aspie also needs to learn the body language of when the “cone is filling up” so they know how to navigate some of their timing and responses. It becomes important to recognize facial and body cues that suggest the Aspie spouse is close to emotional meltdown and help the Aspie spouse understand what they are experiencing.
With no disrespect intended to Aspies, the way I explain some relational issues of Aspies to the non-Aspie or neuro-typical (NT) spouse comes from the help of two Star Trek characters. The first is Spock from the original Star Trek series. Spock was half Vulcan and half human. Spock’s character was half of each race, but never he was never really accepted or understood by either. The Vulcan race sought to live a life of reason and logic without interference of emotion because emotions are not logical or rational. This is how the Aspie tends to process life. They are constantly trying to make sense out of life, processing what they are experiencing through their five senses, without much thought to emotion, theirs or others. This is not because they do not have emotion, but they are simply not aware it is there until it is too late as in the “filled cone” analogy. Aspies pride themselves on logic and rationality and doing things efficiently. When this is challenged or if they feel they are being accused they may be verbally curt or short with someone. If a spouse tries to use tears or strong emotion to sway the Aspie person, this can be taken offensively or evoke confusing emotion in the Aspie which may then be “spilled out” unexpectedly. But Spock is only half of the picture.
Another Star Trek character who can add to the analogy is Lieutenant Commander Data from Star Trek: The Next Generation. Data was an android who for many years did not contain an “emotion chip” and he was curious to know all he could about human emotion. His naivety often got him in trouble in his interactions especially with female characters. For example if a female were to ask Data how they looked or his thoughts about their appearance, he might cock his head to the side, give a glance, then commence to explain what he saw in a straight forward way. As the viewer, you would recognize the female’s face was registering anger or embarrassment or frustration, yet these were not registering to Data as he would continue his analysis. If the female slapped him or cried or stormed off, he was left standing there dazed and then ask another character “Why she did she behave that way. I simply gave her the data she requested as to her appearance and her response seems to be unwarranted by my honest response.” If you watched Star Trek, you knew Data’s character was not malicious or cruel or mean-spirited. He could not process what the other person wanted and he did not have the communication skills of how to “bless someone’s heart” as we say in the south or gloss over the 100% honest answer and say something to make the other person feel better. He gave the answer to the question he was asked. This explanation usually helps the NT spouse.
If you are expecting platitudes or your Aspie spouse to somehow know you are seeking a compliment, the Aspie spouse needs to be cued. Aspies are not cruel or unkind with their words on purpose. They are sometimes like Commander Data, clueless as to what the response should be. So I like to say, Combine the logical processing of Spock and the sometimes clueless social skills of Data, and you can better understand why an Aspie responds the way they do. Aspies fear saying or doing the wrong the thing in social context, especially to the ones they care about. So, if the NT spouse is upset and seeking comforting, asking a question to seek a compliment, or crying because something has upset them, the Aspie registers that the spouse is hurting but does not always know how to respond. In Spock’s way of not wanting to respond wrongly, they may choose not to respond at all, which appears cold and uncaring but is merely self protection on their part not to do or say the wrong thing. They may remain silent or offer logical, calculated advice. The response may be a social faux paus just as Data gave, and they will give the literal response in a genuine effort to help or answer, but usually they get a response they do not understand. As you can see this is
frustrating for both spouses.
Some marriage resources for Aspie marriages advise that you look at the AS and NT partners being from two different cultures. Each partner needs to better understand the other’s “culture” and ways of communication. After a better understanding of how each person processes and responds, the couple can be guided into techniques and tools that will aid them in better communication patterns. Hence, why CBT and Family Systems work tends to be the best strategy for couple. The Aspie wants to please their spouse, and if you are able to logically connect with the Aspie client that will try to help them navigate the NT world, they are usually responsive. These skills will not come naturally but Aspies can be taught various social cues and interpersonal skills. Dr. Tony Attwood explains it this way to his male Aspie adults, “Emotionally you are like a cactus. You do not require a lot of watering by emotion and platitude. A drop of emotion or compliment goes a long way with you just like water to a cactus. However, your NT partner is a delicate rose. She needs more water, that is more attention and compliments than you do. Sometimes you get confused because you are a cactus you think others are designed that way too. But NT’s are more emotionally fragile and need some emotional “watering” even if you think it is unnecessary or excessive, different plants like roses need different types of care. If you were a gardener you would learn what plant needs what to survive. If you want your spouse to bloom, she will need more from you in this area even though it does not make logical sense.”
There is so much more to cover about how Aspies “do marriage”, but I want to emphasize that Aspies can have lasting, fulfilling marriages, and although some marital strategies may be different than the norm, part of helping the Aspie marriage is understanding how Asperger’s impacts the marriage and which strategies can bring help to the marriage.
Attwood, Tony (2012). Atlanta Autism Conference
Grigg, Carol. (2008) “Asperger’s Syndrome in Relationships: Is there Hope?” ASPIA
The Growing Concern of Suicide and High Functioning Autism (aka Asperger’s Syndrome)
How many suicides are enough to warrant concern that there is a problem in this country with our suicide rate? Just one, one should be enough to make us pause and wonder why someone would feel that suicide was the best solution to his situation. There are 30,000 deaths every year in this country due to suicide making it every 17 minutes a suicide is completed and every 42 seconds someone is attempting suicide. SOS Tucson Suicide Postvention services says studies show 80-90% of those who commit suicide had a mental health issue. The rates of suicide are rising among teens with high functioning autism (formerly called Asperger’s /Aspies). There is not a study to provide empirical numbers, but those working with Aspie teens are suggesting that 50% of Aspie teens have contemplated or attempted suicide and Aspie teens are at a 40-50% higher risk of completing suicide than their Neuro-typical (NT) counterparts.
Consider these two scenarios:
“Zach” (not his real name) age 18, is an honor student about to be inducted into a national honor society. Lately his family feels he has been turning some poor choices around and for once he is really talking about college and pursuing a choice career. There have been no changes in his friend circles, no talk of depression lately in the past 3-4 months, things seem to be looking up! The future is bright. The family couldn’t be prouder of his high school and fencing achievements.
“Susie” (not her real name) is a 13 year old 8th grader. She makes all A’s, and everyone around her tells her of her beauty and intelligence. She has a few good friends and is one of the teacher’s favorites. There has been some middle school girl drama and some ups and downs in friendships. Recently, a mean girl targeted her to exclude her from a group going on a school trip that had been highly anticipated since 6th grade. Her family is concerned about the exclusion/ bullying and ask her how she was doing processing all of this. She gave all the right answers, her grades never dropped and her routine did not change.
Which student would you be more concerned about contemplating or completing suicide? We are taught that the common markers are the onset of depression, talking about death or never being born, giving away treasured items, talks of actual plans, acute anxiety, or changes in friends or routines. What if the parent of each were concerned and went to mental health providers but were turned away? What if these students came to you as a counselor or minister do they present as suicide risk? The answer to the question as to which one was at higher risk is- both! Both students were diagnosed with Asperger’s. “Susie” attempted and daydreamed about suicide but did not complete the action. Zach unfortunately successfully took his life this year.
What makes an Aspie teen a higher risk? The number one reason is social isolation and/or rejection which lowers an already low self esteem. What adds to this feeling of rejection is many times Aspies do have decent friendships and get invited to parties in elementary school, then there is sudden shift in middle school. Middle school is the time the teen notices he is “different.” Other students seem to notice it too. Those who had been friends in elementary school suddenly distance themselves. This is confusing for the Aspie. “Why were we friends in 5th grade but not 6th grade? What did I do? How can I make them like me again?” A blog called “Your little Professor” said: “In the teenage world where everyone feels insecure, teens that appear different are voted off the island. Aspies often have odd mannerisms. One teen talks in a loud unmodulated voice, avoid eye contact, interrupts others, violate physical space of others, and constantly steers the topic of conversation to his or her favorite odd topic.” Sometimes these teens appear aloof, cold, selfish or “want to be loners.” Adolescence is a time students are seeking identity and peer approval. What is one to do when all attempts to make friends results in being shunned or bullied?
What else in changing in middle school? School work is getting harder. The “hand holding” and encouragement many received in elementary school is no longer the case in middle school. School expectations are different. Students are expected to do public presentations and worse for Aspies- group projects. When teachers allow the students to pick their own groups, guess who is often left out and then has to reluctantly form what gets referred to as the “loser group“ with the others that were also not included.
We have all heard of “anxiety attacks” but Dr. Tony Attwood said Aspie teens are prone to “depression attacks”. An Aspie teen can wake up fine in the morning exhibiting no signs of anxiety or depression and have a trigger at school such a bully, low grade on an assignment, believe a teacher does not like them, a friend break up, and suddenly be under what he calls a “depression attack.” The depression comes on intensely and paired with a pre-frontal cortex that does not always see permanent consequences of actions is not getting a “do not do it” message from the executive part of their brain. They see the suicide as an immediate response to end sudden, intense pain and thoughts of it being something that can not be undone is not usually part of their prefrontal cortex thinking process. Attwood adds that inherent to the condition is the tendency to catastrophize. Because of this tendency, there are challenges to regulate their emotions. Add to that the amygdala of an Aspie tends to be 10-15 % larger than in Neuro-typicals which can inflate the “danger alerts” in the fight/flight/freeze system. What would have been a 1 on the stressor scale for a NT individual could easily have registered as a 10 to the Aspie. The overactive amygdala sends signals that begin the heart racing, adrenaline production, stomach churning and as Attwood said “It is like the Aspie is the last to know about his or her heightened emotions. He appears to be just as surprised as the observer when emotions have escalated.” He added that in addition to an enlarged amygdala there is less white fiber between amygdala and frontal lobe. The frontal lobes are not getting the signals that the system is under duress and little interaction from executive function which in NTs would be saying “Calm down, hitting them will get you in trouble. Breaking that is not a good idea.”
Aspies have made an art form of “making a mountain out of a molehill” to many people but we need to understand is that what may be a molehill to one IS a mountain to the Aspie. I agree with Dr. Attwood that cognitive-behavorial therapy is crucial for Aspie teens to get often. We should not wait until we think the teen has exhibited something to “need” therapy. A good therapist who understands Asperger’s and issues of adolescence can help the teen explore various issues before it is a major problem. Attwood said that Aspie teens should be getting regular “mental health check ups” routinely to help navigate the tumultuous times of adolescence as preventive measures to help with “depression attacks” and learn positive self-talk and recognizing catastrophizing before the teen takes a permanent action for a temporary problem. I am urging therapists and ministers to understand high functioning autism (Asperger’s). It appears to becoming a matter of life and death in this population of teens.
Should I tell my child they have autism? Should I allow my child to be labelled?
Should I tell my Child they are on the Autism Spectrum?
Rev. Stephanie C. Holmes, MA, BCCC
Certified Autism Specialist
One of the questions I am most often asked is, “Should I tell my child that they are different from other children? Should I tell them about their diagnosis?” A common fear of parents concerns “labeling” the child and the stigma associated with diagnostic labels. Although I understand these fears, we live in a world of labels and I explain to parents, “Your child is different and because of that people around him or her are going to label them. I would prefer they get the correct label.”
What does that mean the correct label? Often, children on the spectrum who are not diagnosed or not “labeled” will be victim to misinterpretations of their behaviors and mannerisms by the adults in charge. It is a fact of life that a child who has learning challenges or who are on the spectrum will not receive the helps that can be provided through a 504 plan or Individualized Education Plan (IEP) without the proper diagnostic “label”. The following is taken from a special education website which says, “Only certain classifications of disability are eligible for an IEP, and students who do not meet those classifications but still require some assistance to be able to participate fully in school would be candidates for a 504 plan.” Disabilities or challenges that meet the requirements for service are specifically outlined. The school system is not required to give services based on a parent’s hunch or because they are failing the grade or have various behaviors of concern. In order for the school to put a plan in place, the “label” or diagnosis is required.
But I don’t want my child to feel that he or she is different. I do not want them to be treated differently. I can tell you that your child will eventually figure that they are different, that they are “differently- abled.” My concern is when a child on the spectrum is in a school setting and is not diagnosed, teachers form other labels like “disruptive,” “defiant,” “lazy,” “difficult,” “selfish,” “rude,” or “does not belong in this classroom.” That is why I say I prefer for children to get the proper label. Eventually the child will figure out that they are different. I preferred to take a pro-active approach with my children and that let them know that they are different, and different does not mean bad or less than. Different can be good.
When I told my daughter she had Asperger’s Syndrome she was in the 4th grade. I wanted her to know that Autism was only one label or word that describes her behavior. These are the labels I described to my daughter. I said,”Sydney I want to explain to you why you have been having such a hard time at school and making friends, but before I do I want to tell you some very important things about yourself.”
First of all, you are a child of God. You are made in His image and here are some things the Bible says about that: It also means you are:
Loved John 3:16
Chosen I Thessalonians
A New Creation 2 Corinthians 6:13
Blessed Galatians 3:9
Victorious Revelation 12:11
Heirs in Christ John 17:11
Fearfully and Wonderfully Made Psalm 139:14
Forgiven Ephesians 1:7
I took the time to read these verses to her and speak them over her. I further explained,
You are not only a child of God, but you are my child and I love you unconditionally. There is nothing you can do that will make me not love you. I will defend you and protect you at school and anywhere because you are forever my child.
You are gifted and talented in music and art.
You have a loving heart for animals.
You may not know how to tell people that you love them, but I know that in your heart you love people and you try to help people in your way.
You are a wonderful reader.
You are gifted in math and science.
You are so many wonderful things. These things are who you are. But you know how you have had struggles at school and getting in trouble and making friends? That is because you have something called autism. Autism makes it difficult for your brain to understand some things, and it is why you get frustrated sometimes and things bother you so easily. That is autism. I will never allow you to use autism as an excuse to fail. I will never allow you to use autism as an excuse for bad behavior. I will also remind you that you have Asperger’s but you get to decide if Asperger’s has you. Asperger’s is a condition you have. It does not have to define who you are because you are so many other wonderful things. Asperger’s causes some things to be hard but it has some gifts too like your memory for details, your ability to solve math, and your wonderful vocabulary.
But what did your daughter do about her diagnosis? How did she take it? These thoughts have been reinforced for the past 5 years. Let me share with you the essay she just wrote for 9th grade composition. Her prompt was, “Write about a core belief that you hold dearly and be willing to share with the class.” Below is that 500 word essay.
People all over the world face challenges, struggles, and difficulties. The question is, will they let that obstacle define them, or will they rise to overcome what was thought to be impossible? Many believe actions are set in stone, and it is not possible to overcome. There are few who do not. I believe that no matter who you are or what you have done, anyone can overcome an obstacle. No matter how hard, how difficult, or how impossible it seems, anyone can overcome an obstacle.
There was this girl I used to know, who was very close to me. She had trouble in school, with friends, and nearly every aspect of her social life. This is because she has Asperger’s Syndrome, also known as very high functioning autism. When she was first diagnosed, the diagnosis was believed to be more prevalent in boys. Few teachers and few administrators knew how to help this girl succeed in school. The special education room was not a proper fit, but she found it difficult to be in the mainstream classroom. When she was confused or having an emotional meltdown, the teachers misinterpreted this behavior as disrespectful or disobedient behavior. In reality, she was communicating she needed help or further clarification of the instructions. Unfortunately, the girl was suspended for over 50 days of school and expelled from five schools by her third grade year. Many people, including people her parents thought to be supportive family friends, gave up on her. They thought she would never overcome her problems or her struggles. They thought she was confined to a path which would lead to Juvenile Detention.
This same girl who struggled so much in elementary school became an honor roll student throughout middle school. She is commonly referred to as a “goody two-shoes”. In case you have not put the pieces together, that girl was me. How is this possible? Well, I refused to allow others to define me by my behavior and my diagnosis. I was determined to prove to the teachers and the adults around me that their beliefs about me were wrong. I overcame my problems. My faith helped me overcome one struggle at a time. I decided that my diagnosis was not an excuse to fail. I will have to deal with more in my life than my fellow peers, but I refuse to let my problems limit who I can become.
I hope that when my family has finalized adoption that I can help the children who come into our home to believe in themselves. Children in the foster care system have had many struggles and have had many people give up on them. I believe that my story can inspire them to believe that their past does not define who they can become. Nothing is impossible when you set your mind to achieve what you believe.
Do not be afraid of labels. Diagnostic labels are helpful to help you help your child get the services they need. Remind them of who they are, not what they have.
Asperger’s and Spirituality
As I recall a time in my daughter’s life when she was not drawn toward the church or Christians, I wonder how others with Asperger’s Syndrome feel about the church, religion, and spirituality. I googled “Aspergers” and “Religion” to research Aspies’ thoughts about this matter. (Individuals with Asperger’s often refer to themselves as Aspies). To my surprise, there are hundreds of articles written about Aspies and religion. Psychology Todayrecently featured two articles on this very topic:
- Bullying, Hypocrisy, and Church: An Asperger Perspective on Religion
- The Pain of Isolation: Asperger’s and Suicide
The reality of many Aspies’ experience with religious hypocrisy grieves me.
Aspies are known to be literal, black and white thinkers who want or need evidence or proof. Spiritual faith does not require proof. Many are known for great intelligence, and Aspies tend to value knowledge and perfection. Aspies are also known to have narrow interests and can obsess about topics of interest to them. How would these tendencies relate to an interest in spirituality? I found articles by Aspies who not only report a deep connection to Christianity, but to many other religions as well. However, many report rejecting faith, as well.
Aspies have the ability to grasp spiritual concepts and to develop a personal relationship with God, but relationships can be a challenge if not an enigma in the Aspie mind. Aspies are not known for their social skills, relationship building, or affect recognition, but I can tell you they are usually quite adept at detecting incongruencies between one’s stated beliefs and one’s actual behavior.
As I read articles by Christian Aspies, many have a black and white beliefs about God, the Bible, and what behaviors are acceptable and not. Some of them confess to being overly perfectionistic or legalistic in their faith, but their understanding of God and His Word is real. I can see this in my own daughter’s understanding of these matters. She too can be quite legalistic in her faith and get caught up in what Robert McGee’s Search for Significance calls “the performance trap.”
For example, she can become easily stressed if she receives money and forgets to tithe on it the very first Sunday she has the opportunity. She can raise money for missions and have a thought that she wished she had raised the money for herself and feel overly guilty for having a natural human thought. This is a wonderful teaching moment as I try to guide my daughter through her now teenage faith.
In her childhood she experienced some things that made her feel disconnected from church. When she was mistakenly expelled at the Christian school associated with our home church after being promised, “We are your church. We love you. We will never expel you,” she called the headmaster and staff pastor “a liar.” She screamed, “The church lies. He did not love me for who I was.” She carried bitterness and hurt from that experience for nearly four years. Thankfully, she remained tender toward God, but she had a negative feeling about “the church” as an institution. This is just one example of literal, black and white thinking.
I wish my daughter’s experience was an isolated incident. But, as I read articles about children and adult Aspies, many are quick to point out the hypocrisy in the church. It seems these individuals have paid attention to the sermons about how Christians are called to live and what the Bible calls sin. To individuals with Asperger’s, the biggest proof for the nonexistence of God is when they see people in the pew living double lives. For a black and white, literal, visual proof thinker, one negative interaction with a “Christian” can cause them to write off spirituality all together.
In my review of what Aspies have written about spirituality and religion, it seems the most common stumbling block is a negative experience with Christians. Aspies usually want to have contact and relationships with others. However, they lack many of the social skills required to keep such a relationship. Many individuals with Asperger’s believe that, since their schools, jobs or peers had rejected them or made fun of them, surely the church will be a place to find solace and understanding. After all, the Bible commands us to love God, to love people and to follow the golden rule. This sounds like a welcome refuge to individuals who are often socially rejected, misunderstood and ostracized. But too many times, Aspies experience the same rejection in the church.
This reported rejection by their peers and places of ‘’refuge” could explain the research that reports that, by the age of 13, nearly 50-60% of Aspies have contemplated suicide. This is double the national norm of “non-Asperger” teens. Research shows that the rate of suicides among Aspies is on the rise. When Aspies are asked why they contemplate suicide, the most common response is the pain of isolation and rejection.
Jesus said in John 13:35, “Your love for another will prove you are My disciples.” For an Aspie, this could quite literally mean a meaningful relationship with God and other believers, or rejection of God and disconnection with His people. Sadly, it could be a life and death decision. The stakes are high.
Will we be the Church? Will we reach out to individuals with Asperger’s and seek to understand them? Or will we reject them because of their odd behaviors and our own discomfort interacting with them? As counselors and ministers, we must take the lead in living out the Gospel in such a way that we offer hope, acceptance and safe relationships to those who are different from us, including those with Asperger’s.