TELLING OUR CHILD ABOUT
HIS ASPERGERS SYNDROME

Josie’s Diary entry - March 1999

Damian had started to question why he ‘wasn’t like’ other boys. He began to reject his teacher-aide at school; it was a clear case of not wanting to appear ‘different’, wanting to fit in.

He had many questions.

"Why did I have to go to that special school last year, other kids in my class didn’t?"

"Why do I need a teacher-aide?"

"Why do I go to different types of doctors?"

He’d fallen into a depression, wanted to stay home all the time, didn’t want to go to school. He was constantly sad, going to bed crying. Not knowing why he was feeling this way. He seemed very confused.

It was time to tell him. The reasons we had waited four years were fading fast. Up until now we’d gotten away with self-esteem comments: ‘you need help with listening, and Johnny needs help with Maths, but you’re really good at Maths and Johnny is good at listening’.

The "you’re special" came up a lot! Damian was diagnosed at the age of five as ‘mild’ and we felt he was too young to understand this ‘label’ and that maybe he could get by in life with speech therapy and social skills classes and... who were we kidding!

I’d also heard of another child who used the label as an excuse without really understanding what the syndrome was about, and so we decided to wait until he was mature enough to understand the enormity of it all. I started to feel a slight guilt... Should I have? Could we have?

When he was first diagnosed, there was a minimal amount of information available, and what WAS available was quite depressing. The last four years have been a learning curve for us as well, and I now felt confident in answering his questions.

Early April 1999

He was going downhill fast, his dark moods and depression were heart wrenching. His reactions to his anxiety and stress levels brought him from ‘border-line’ to full-blown Aspergers syndrome!

We decided to spend the Easter break at the beach, one of Damian’s favorite places. One evening we were at a seaside restaurant and he looked out the window and the saddest look came over his face. I looked out to see a group of teenage boys playing on their skateboards, laughing, joking, and just ‘hanging out’.

Damian told me he wasn’t like them, he knew he wasn’t like other boys. I think that’s when he felt the loneliness, the frustration of not knowing how to ‘hang out’, the sadness. I felt sad with him. I decided that evening that he should know, and know now.

My mind was swirling as we arrived back to our apartment and I sat down with him... I went blank. I couldn’t get the words out. "You’re special to us"; "you’re good at this" was all I could manage. I knew that he wouldn't just settle with a label. The questions would come thick and fast and I’d have to have the answers. Then the answers would have to be given in a way that he could go away and absorb them in his own time and way. I knew that Damian would want facts! I spent the rest of the week drafting up a booklet catering for his visual learning ability. I wanted the booklet to attract his attention, answer his questions and make him feel good about himself again.

Late April, 1999

After two days on the computer I produced a booklet titled The Mystery of a Special Kid. It was ready, we weren't! We waited until his little sister was fast asleep and hit him with it that evening. We sat him down and read the booklet to him, his eyes lit up when he realized it was about him. A bag of mixed emotions. He was intrigued as well as sad, relieved and excited. How do you feel? I asked him.

"Glad that I know what's wrong with me" he answered.

It was as if a cloud had lifted (from both of us!). Strangely though, he hit us with a question.

"What about Dad?" he said.
"What about Dad!?" I answered.

Dad was sitting in another chair very quiet and solemn.
"Is Dad sad that I have Asperger’s Syndrome?" he continued.
‘No, why do you say that?’ I asked.
"Because you've been doing all the talking, and he hasn't said a word".

He looked at his father with a look of ‘has Dad accepted me?’ or ‘have I failed him?’. It was at that moment that I started to understand the importance of a special bond between a father and son.

We kept him home from school the next day. He spent most of the day re-reading the booklet over and over. He had his ups and downs that day, he even went through the "why me?". I call it his grieving day.

He still has grieving days, I know, because he has the booklet out on his bed.

He’s still trying to absorb the information. Damian is a very visual learner and so I tried to cater for this. He had to solve the case of this ‘special’ kid and after clues, questions etc. he discovered that it was himself. I wanted him to know the how's, whens, why's and what's of Asperger’s Syndrome, but in a lighthearted way. I wanted him to know that we all have a disability. There are also some self-esteem activities and hints on how he can continue to lead a happy life and carry on being a successful citizen.

Well I just got over that hurdle and now I have another dilemma. After reading the booklet to his sister, she asked ‘Are you going to write a book about me, Mummy?’ – now that’s another paper... and another booklet! You’re Special Too! for siblings is in the making!

DAMIAN’S INTERVIEW

Some time after these diary entries, Josie asked her son these questions as an 'interview'...

How old are you?

I’m nine years old – but my birthday is in two weeks and then I’ll be 10.

How did you feel before you knew you had Asperger’s Syndrome?

Not normal, I knew I wasn’t like other boys.

Did you know there was something different about you?

Yes.

How did you know you were different?

I didn’t do what other boys did.

How did you feel when your parents told you about Asperger’s Syndrome?

Happy – I liked it! Because then I knew what I’ve had all my life, why I’ve been getting uptight.

How do you feel now, about having Asperger’s Syndrome?

¾ good because I have it and I like being different.
¼ bad because I get uptight a lot.

What do your friends or classmates think about you now they know you have Asperger’s Syndrome?

Nothing has changed.

Because you have Asperger’s Syndrome, what are the things you can do to help yourself?

I don’t like these types of questions!

What is Asperger’s Syndrome?

A disability. A small part at the back of the brain that’s not working the same as others. Something that makes you uptight and makes you not look at the other person and stuff like that.

What are the things you find hard to do because of Asperger’s Syndrome?

Changes.

Being teased.

Sports - I get confused.

Short memory.

Worksheets - you have to read and pick out stuff

What are the things you find easy because you have Asperger’s Syndrome?

Maths.

Science.
Long memory.

Write a sad story about you and Asperger’s Syndrome.

I lost control and got really angry at Dad and kicked him one day.

Write a happy or funny story about you and Asperger’s Syndrome.

What do you mean?

Anything else you’d like to write about.

I’m wondering why my parents didn’t tell me two years ago – at least last year.

Damian was presented with this questionnaire and willingly filled out all sections on his own.
He couldn’t quite explain to me what he meant by ‘normal boy’, but knew that he was different. I think this relates to when he wants to be part of a social situation, and doesn’t have the instinctive skills to do so.

Damian has strong feelings of failure when he loses control with his anger, and this came through in a lot of his answers.

I’m pleased he doesn’t feel ostracized by his peers, these children have known him since first grade and quite often just say ‘but that’s just Damian!’ We also had ‘show and tell’ with Damian’s class, explaining Asperger’s Syndrome and why he has the aide etc, following the session with an activity sheet where the children had to fill in details of their own disability and personality details.

He doesn’t like open-ended questions and hates comprehension (the worksheets that you read and pick out stuff). He was obviously tired by the end of the questionnaire and couldn’t be bothered with the ‘happy/funny story’ question.

Josie Santomauro
Brisbane, Australia.

Copyright held by author, reproduced with permission.

REFERENCES
Pictures of Me: Introducing Students with Asperger’s Syndrome to the Talents, Personality and Diagnosis. GRAY, Carol (1996).
The Mystery of a Special Kid. SANTOMAURO, Josie (1999).
Set for Gold– Strategies for Life SANTOMAURO, Josie (1999).

Click here for the full range of Asperger's and autism fact sheets and personal stories at www.autism-help.org