Expert: Paul Johnson - 10/14/2008

Question
QUESTION: Is it possible for people to go undiagnosed with asberger's syndrome even when they are teenagers?
My sister does not like to talk to a lot of people and often shys away from human contact and conversation with those she is not familiar with. She makes eye contact for about a second at a time, rarely shows any emotion and seems to have trouble responding to others emotions as well. I've noticed how she looks at other people before reacting to something, she is extreamely smart when it comes to people though. For example, ever since she was little she has copied what other's were doing as if she knew that she was different, I've seen her watch others and analyses them so she can copy them.
She keeps to herself, often reading for hours on end and sometimes goes into a world of her own. interestingly, her interest is autism and asbergers since someone suggested that she might have it. Other people have said it as well but my family has just laughed it off but i'm wondering if there might be something in it.
Is it possible that it could have gone unnoticed up till now?
Thank you

ANSWER: It happened to me. In fact my Asperger's Syndrome diagnosis went undetected until I was 46 years old.

Yes your sister sounds like she has AS for sure with all of the important symptoms. I think it is important that she thinks that she has it. She will self diagnose and will wait until the family and clinicians catch up to her.

Most of the times the high functioning AS go undetected until the teen years because of the amount of social skills needed at that level. Get an official diagnosis and relieve the mystery.

---------- FOLLOW-UP ----------

QUESTION: Thank you. i have posed the question to her and she is thinking about, as she does. but i don't think it will ever be diagnosed as my parents will never take it seriously, it sounds really bad but my mother wouldn't want an asbergic child. her children have to be perfect. my sister would certainly not bring the subject up herself so i'm not ure what to do. at least i know. is there any way in which i could show my parents for sure that she has it because i think it would be important to know?
Thank you again.

Answer
Dear Ellie,

Thank you for your important follow-up question. Unfortunately there are many, (far too many)examples of people who are in charge and are ignorant to what is occuring right under there nose. The salient question to be rephrased here in response to your question is: Who says individuals with Asperger's Syndrome are not perfect? The prevailing assumption in the disadvantage and problematic aspect of an ASD causes us on the spectrum to assume that something is wrong with us. It has been my experience and that of numerous of my brethren/sistren on spectrum that our greatest struggle is living in an environment where we are surrounded by people who are ignorant to who we are and to what our lives represent. Sadder still many of us living with an Autism Spectrum Disorder do not fully understand this ourselves.

So ultimately our task is not to convince those who do not understand us to now turn around and accept who we are in our profound differences. Our task is to be our "Aspie self" with such authenticity that people all around us will know what we are about and eventually interact with us on a level that respects our difeerences. This is a longer process which involves raising awareness to people in general as to who we are and how to identify the beauty in our neuro-diversity. This is why I am here answering questions and helping people to understand the challenges. I invite you and your sister to join the movement and not to wait for those unwilling or unable to understand you. Before you know it life will have past you by.

If you would like some suggestions as to how to do this contact me at my e address: PLJohnson46@yahoo.com I would be happy to assist you.