How Autism Grew my Faith

A new book from Stephanie C. Holmes. Available from Amazon in Kindle and paperback formats.
3 Topics now available on DVD
Stephanie has collected her teachings on Aspie/NT marriage into a 5 part DVD series. Also available is "Moving Beyond Surviving to Thriving: ASD issues that impact marriage & Family" and "Spectrum Teens and the Issues they face".

There are clips of the marriage sessions on youtube:

These videos can be ordered from the Appointments and Products tab.

Archive for the ‘Resources for Special Needs Families’ Category

Treatment Resistant Anerexia 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.

     

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.

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, Sensory Processing and The Holidays

Do you find that the holidays turn your ASD/SPD child into the Great Pumpkin, a giant turkey, or perhaps the Grinch that Stole Christmas? As we approach the last two months of the year, I feel it appropriate to address the holidays and family gatherings and their effects on a person with ASD or sensory processing issues. For most of us “neuro-typicals”, October through early January represents a time of gathering time with the ones we love.  It is full of family, hugs, decorating, baking, and numerous events and parties that consume our schedule. For those with ASD or Sensory Processing Disorder, these same holidays and gatherings can cause anxiety and major behavior and emotional meltdowns.  Let me first define Sensory Processing Disorder (SPD).

 

According to the SPD Foundation, a working definition of sensory processing  is “a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.”  We may take for granted the process involved in our brains to integrate our five senses: touch, taste, smell, hearing, and vision. For those on the autism spectrum (1 out of 88) and those with SPD (1 out of 20), this process of sensory integration is challenged and the child may respond with aversive behavior or be over-stimulated.  Every day life is flooded with information that is received through the five senses which can cause issues for a student in a school or church setting or just the normal daily routines at home, but the holidays add much more stress to their already over-loaded sensory circuits.

 

Let’s look quickly at some of the senses that may be over-taxed during the holidays:

 

Halloween or Fall Festival: Costumes (too itchy, scratchy, tight, heavy, fluffy etc), games and activities at the event (the noise, colored lights, foods), trick or treating (speaking to strangers or asking for candy, pickiness with what they like to eat- too sweet, too sour, too sticky, too hard, too chewy).  Some neighborhoods go all out with house decorating and flashing lights or monster motifs on the front lawn. Some homes greet the trick-or-treaters with loud noises or boisterous voices.  For those who respond aversively, these festivities, that are intended to be fun, can be taxing and stressful resulting in severe anxiety.  For those who get over-stimulated, the effect of too much fun and excitement can cause the same emotional meltdown as the aversive child when the sensory process is not adapting or is challenged by the sensory data.

 

Thanksgiving: We think of large family gatherings and various foods. It is important to remember that those who are sensory aversive may not enjoy hugs and kisses and tickling and horse play that sometimes accompany this family gathering. It is hard to believe that a hug can be processed as pain and uncomfortable for the aversive person, but it can. There is always that one relative that is offended by not getting a hug. It is important to understand the person with SPD or ASD is not being disrespectful or unkind by refusing a hug or a kiss, but may experience this as painful or uncomfortable and the brain is reacting as if the hug is harmful. Allowing a child to have space and shake hands or wave from across the room should be considered as alternatives to hugs and kisses especially from distant relatives. Another big part of the holiday is food. Those with SPD and ASD can react to foods that are not part of their normal diet. Have some of your child’s favorites present at the holiday meal. This is not the time to experiment with new foods.

 

Christmas/Hanukkah: Both holidays involves lights. If your child complains about seeing light displays and flashing lights, this suggests he or she may have sensitivity to light.  Ceremonies and festivities involved in both holidays involve getting together with family and exchanging gifts and often food. During the month of December children have school or church plays, parties, and extra activities with friends and families. Again, the holidays are not the time to challenge the child, but neither should the rest of the family avoid the activities altogether for the sake of one who does not enjoy the activities.

 

New Year’s Eve: Noise makers, bright lights, big crowds, large parties, yelling as the clock strikes midnight- all of these sound fun and exciting, unless your brain processes them differently.  These can cause the sensory aversive child to recoil by possibly putting his hands over his ears or hiding.

 

As a mother of two children with sensory issues, I used to believe that I had the two most complaining children on the face of the planet until I educated myself about their challenges. I was always trying to get them to have fun and enjoy various things about the holidays, without understanding how they were not experiencing the holiday’s sensory issues the same way I was.

 

I believe there is balance in respecting the challenges of ASD/SPD and modifying events to a degree and embracing the traditional aspects of the holidays mentioned above. Take a mental inventory of the times the child seems to meltdown at the holiday? Were they using a sensory word or phrase?:  “That is too bright.”, “That is too loud”, “I hate that taste!”, “That is itchy!”, “That is scratchy!”,  “That is too hot”.   An Occupational Therapist is a great resource to help with sensory processing issues, but you can educate yourself through books and websites and gain practical solutions to help your child or teen through the sensory overload that is approaching in our upcoming holidays. Making some slight modifications will make the holidays more enjoyable to you and less stressful to your child with ASD or SPD.

 

Asperger’s and Adolescence

For the past two years, I have begun writing and speaking about my family’s journey with Asperger’s and other special needs. My message is simply that God has a plan and purpose for every family and this includes families who are challenged with a special needs’ child. There are different issues that arise with ASD in various stages of life. I thought it might be helpful to get firsthand knowledge of the challenges one might have as an adolescent with Asperger’s. My daughter has written some thoughts for you. I have chosen not to edit her words very much so you can hear from her directly.

Hi! My name is Sydney. I am 14 and I have Asperger’s Syndrome. I guess if I were to start with a major issue with Asperger’s, it would be the feeling that few people really understand me or get me. Nobody really understood me when I was little. Heck, most people still don’t. When I was little I would get so frustrated when the teacher or an adult could not understand what I needed or wanted. Sometimes at school I would be so stressed out that I would turn the desk over, throw or break pencils, or hit or spit on the person. These behaviors were first seen as disrespectful and the thought then that I was bad, not that I was trying to communicate something with these fits. Instead of wanting to help me, I would be expelled. This would lead me to think I was not wanted or not loved by these adults who made these decisions about me. If I would have known a better way to communicate my needs I would have. I did not want to hit or spit, I simply wanted space or to be left alone.

I have issues communicating with my parents, family, friends, teachers, and yes even boys. I try to come up with ways to communicate in a way that stresses me out a little less. For example, I may have a question about something at school, but I do not want to ask the question in class. So, with teachers I try to stay after class when I can ask that question privately. The issue with that is the anxiety over being late for the next class and having to explain why. Communicating with people my age is even harder! I have one really close friend. She is easy to talk to because she lets me be myself and I do not feel anxiety around her. Others seem to get upset with me or tell me I say things that upset them. They say I am too honest or tell too many facts.

I am still confused about why one girl is mad at me because she was writing that she was fat and ugly on her hand and I told her to stop that. I told her she was not fat or ugly and she needed to stop saying that about herself. She got mad at me. I still don’t get why she thinks she is fat and ugly when she is clearly thin and not ugly. I just don’t understand these girls sometimes. They want to talk about boys and shopping and plan at lunch what they will be wearing on the weekend. Why? When I state the obvious pointlessness of these conversations people get mad at me. Some even say I am a “loser.” Sometimes it is just easy to talk to boys. Then I get accused of flirting, but I just find talking with boys less stressful sometimes. I don’t want to flirt. I am not even sure how to flirt, but they say I am flirting? How do these girls know so much about boys, clothes, and how to talk to boys? Why don’t they get as stressed out about all this as I do? Where did they learn all that, and how did I miss it? What is wrong with my brain that I don’t get it?

Another communication issue is people my age use a lot of sarcasm. Sarcasm is used so often it is hard for me to detect what is not sarcasm or a joke. One time last year a PE teacher said that if our class did something one more time we would not get to participate in field day. She then asked, “Who doesn’t want to do field day?” I raised my hand, because I HATE field day! I always have. But she and the other students laughed at me for answering what they said was a “rhetorical question.” Most kids love field day because it gets them out of class and work. I hate it because it is loud, I am not good at many of the activities, and you don’t know what will happen throughout the day. But I am thinking then, why ask a question if you don’t want the answer? If I answered honestly, why are they laughing at me? It really hurt my feelings. I had to excuse myself to pull myself together from the humiliation of the moment. This was another “loser moment.”

Because I am blessed enough to have this one good friend, she helps me out when I get stuck in a conversation or confused. She talks to me on Facebook chat and lets me know what mistakes I made communicating at lunch that day or what people thought I said. This is helping me learn to gauge my social interactions at lunch and times between classes. Trust me, no one is happier than me that my mom is a counselor and she helps me figure all these things out. I feel sorry for kids who don’t have a mom or dad they can vent to and talk about anxiety to and to help them navigate the communication issues of being a teenager! Being a teenager and knowing what to say and when is stressful!!!!! How do you people know what to say? I don’t get it.

 

What Sydney is expressing is common among adolescent girls with Asperger’s. On “Turn it Around Radio” with Dr. Tim Clinton on October 25, we will discuss specific issues adolescents with Asperger’s deal with on a daily basis. For a neuro-typical adolescent high school and social politics can be challenging to navigate but when you have an impairment or deficit in your communication skills, social skills, hygiene skills, and more it is tougher to make and keep friends. When the ASD teen is rejected socially, it can lead to other issues such as depression, anxiety, and even suicidal ideation. It is crucial for the Aspie adolescent to have a safe haven at home and at church. Having a counselor can help the Aspie teen learn to communicate frustration, anxiety, or simply how they feel about being different from other people and not fitting in socially to the main stream crowd.

Resources for Special Needs Families

After speaking on this subject a few times people ask me to list resources so as I read things or find resources I will add them.

Resources for Families/Clinicians

Helpful Websites:

For finding services to help diagnose and work with symptoms of ASD/Asperger’s: www.autismspeaks.org

For finding more information about ASD support: www.autism-society.org

For finding out about all things Asperger’s: www.tonyattwood.com.au/

For finding a doctor near you to deal medically/holistically with ASD: http://www.autism.com/pro_seminars.asp

Available from the AACC: Books for Families and Clinicians

Caring for Kids and Teens God’s Way Curriculum: The entire curriculum is excellent, but those sessions that I found particularly helpful for this topic of special needs kids: CHAD 401, 402, 501, 101, and 201

H. Norman Wright’s Fears, Doubts, Blues, and Pouts is excellent for social stories with young kids- great for ADHD, ODD, ASD, OCD- especially ASD.

Dr. Sibcy & Dr. Clinton’s Attachments

Books helpful for ADHD, ODD, ASD:

Dancing with Max by Emily Colson

1-2-3 Magic by Phelan is a great book on behavior management.

Your defiant child by Barkley and Benton

Becoming a Master of Self- control: Meet Melly her color is MAD- by P. Goldberg is an excellent workbook families can do with their children or clinicians with clients.

How to really love your angry child by D. Ross Campbell

Social Skills Activities for Special Children by Darlene Mannix

Resources specifically for ASD/Asperger’s:

How to Talk to Parents about Autism by Roy Q. Sanders

Asperger Syndrome and Difficult Moments : Solutions for Meltdowns and Rage by Myles and Southwick

Social Skills Picture Book by Jed Baker is great for parents and clinicians to do with ASD kids and teens

Asperger’s by Tony Attwood (one of my favorites)

Understanding Asperger’s: A Guide for Teachers and Educators: Burrows and Wagner is a great read for parents to help their child and understand what is going on academically.

Social Stories by Carol Gray

Resources concerning Sensory Integration Issues: ALL kids with ASD/Asperger’s have sensory issues, but NOT all kids with sensory issues are ASD. Occupational Therapy is also a great resource.

Books on Sensory Issues:

Too loud, too bright, too fast, too tight: sensory defensiveness by Sharon Heller, PhD

The Out of Sync Child by Kranowitz & Miller

The Out of Sync Child Has Fun by Kranowitz is great for sensory activities at home.

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:

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.