Explaining the diagnosis...

**photo credit to: http://www.wolfberg.com/ipg_sites.htm**

"My Best Friend Will" by Tara Tuchel, M.S. CCC-SLP and Jamie Lowell (5th grader)

Author is also an Autism Specialist in her district and is doing continuing work in Integrated Play Groups.

A recent discussion came up with a friend about 'when to tell your child about Autism'. This is one tricky subject in my opinion. Having 2 boys on the spectrum I can honestly say it was all in the timing and the approach.

Mr.R (now 17) is diagnosed as having Asperger's Syndrome as well as Anxiety, Tourette's and OCD *some of these are co-morbid...and to me roll into one!* Mr R knew he was 'different' from very early on......probably as early as 1st grade when he couldn't understand why certain tasks were more difficult for him. He also had alot of trouble making/keeping friends. As years passed, we still didn't have a clear dx; so we couldn't in reality explain things to him. It wasn't until almost 6th grade that we finally got the Aspergers diagnosis. Until then....he had alot of 'non-specified' labels which did not give him adequate services both in and out of school.

After receiving the dx...we started with mobile therapists whom with all good intentions began working with him to help him understand his 'quirks'. They started using a workbook of sort...*think it was called 'What Aspergers means to me' or something*. Unfortunately, Mr R's emotional level of understand IS higher than my other son.....he turned ALL the information they gave him into emotional deficeits....aka...HE considered himself defective and faulty. Severe depression set in and eventually he became very angry...even tried harming himself. It was a frightening period for all of us......and I cried alot thinking how this child could possibly get through this. But he did! I can't say he's fully accepted but he's come a long way and finally feels comfortable with himself (now a Junior in High School).

Maturity, caring and understanding and 3 years later........he now advocates for himself and accepts fully who he is! He even made a presentation on Asperger's for his Health Class. He felt the need for ppl to understand him and his 'ways' and tries to debunk a lot of rumors that had started in school. Many kids (teens) came up to him and wished him well....and said they understood him a bit better. No...it really hasn't changed his social life in my opinion. I DO feel that he's feeling more confident in himself and allowing himself to accept others opinions (biggy for him!)

Mr M (now 14) was diagnosed at age 3 with Severe Autism and Mental Retardation . The diagnosis was done at Kennedy Krieger Institute in Maryland. I was devastated at the news.....and just as in Grief recovery....it took a while for me to get through the stages of grief. But time was essential and we took the diagnosis and applied for all the in-home services, OT, Speech and school services we could get. We had many many hours of *modified to suit HIS needs* ABA and therapists working with him. Today......he is considered Average IQ and High Functioning Autism. Yea...someone who knew him then would NEVER recognize him now.

For years, Mr M would tell me...."Mom....I'm special you know!" My reply, "Yes...you sure are!" *my heart would melt* He continued, "no...you don't understand....I'm REALLY special!" In his own 'way', Mr M knew he was different. This in itself scared me...and fearful thoughts of Mr R's acknowledgements and depression came flooding back. But learning as I have...Mr M and Mr R are TOTAL opposites *in every way*. I put my trust in that fact and talked to his Counselor about explaining Autism to him.

The book, "My Best Friend Will" was what we started with last summer. I would recommend this book if the child's reading level is lower or if they need visual supports in helping them understand the text. The one thing we did with the book was have him read it then discuss it page by page *for comprehension*. Mr M has a reading level around Gr 4...due to comprehension problems when the text gets too lengthy. This book was perfect for him. The Author and the 'friend' explain through out the book how Will is different but also explain how Will is just like any other friend your child may have. Mr M and his counselor read the book together.....and it was like a light bulb going off on Mr M's face...he knew! He said very calmly but with a big smile, "I have Autism, don't I?" He related to Will with food issues, need for sameness and his friendship issues. Mr M was so anxious to tell me that he JUST KNEW he was special...and now he had a 'name' for why he was so special. Mr M usually understands things better when he has something he can connect the 'ideal' with.

Mr M has used the word Autism at school. They are not really 'happy' about his announcements......but I think its more his 'delivery' than the issue of telling ppl he has Autism. Mr M is completely happy with himself and his diagnosis. He LIKES being 'special' and refuses to let his teachers tell him to 'act normal'. He corrects them by saying, "well...you know I am special" OR "I don't think that way....my brain is special".

Teachers have talked to me about them trying to convince him that he needs to act 'normal' around other children if he wants to be accepted. They upset him more by trying to make HIM fit in...then just accepting themselves 'who HE is'. What a blessing to have a child who IS different....and who feels GREAT about themselves! WHY...would you want otherwise, IMHO?

Explaining the diagnosis on Autism to me is an individual issue. When, how, how much is all dependent on the child. Just as in choice of therapies, methodology and various treatments.....NO CHILD should get a cookie cutter approach.

Know your child, know their capabilities for understanding, know their ability to ask questions.......know yourself and your own confidence to deal with the emotional fallout that may or MAY NOT come from telling them.

This will be an on-going task for us as parents. As they progress and move forward.......so will the task of being there to support the child in his lifetime achievements. To me...this is not much different that "NORMAL" parents have...just 'special'. :)

DES