Me and my girl and boy, raising awareness and acceptance of autism

Today’s Guest Post is from Karen, you can follow her on twitter at @kaz747. Karen’s 21 year old daughter has recently been diagnosed with autism and she very kindly agreed to write a post about the diagnostic process.

Having a daughter who was diagnosed at 4 years old and a son who is commencing the process at 10 years old, I was curious as to how the process worked for older children and adults, I found Karen’s post very interesting and I’m sure others will too.

Karen is very happy to answer questions, which you can either do via leaving a comment or contacting her on Twitter. For privacy purposes her daughter’s name has been changed.

“Adults and Autism

“Your daughter has autism.” The words didn’t surprise me but I still felt as a sense of shock when I heard them spoken aloud. This wasn’t a young child that we could set on a pathway of early
intervention therapies. She was 21, an adult.

We’d seen plenty of therapists and doctors over the years. Claire’s health issues began with (or probably before) her premature birth. At one stage she was seeing so many medical specialists our life became one waiting room after another – paediatrician, ophthalmologist, gastroenterologist, endocrinologist, two speech therapists (1 private, 1 government funded), occupational therapist, physiotherapist, podiatrist and psychologist. We also sent her to social skill-building programs in school holidays.

Claire was diagnosed with ADHD, developmental delays and learning disabilities at the age of five and later with anxiety. I remember clearly the day the school psychologist phoned me at work and said, “I’ve taken your daughter out of class and tested her. There is no way this child will learn to read or write in main stream education so you are going to have to look for alternatives.” Claire was in pre-primary at the time. We met with the teacher and principal and decided the best course of action was for her to repeat pre-primary. She did repeat it and despite what the school psychologist said, her whole education was completed in mainstream education. We were so proud when at the High School Graduation she was awarded the Top Student Award for her Hospitality course.

Watching a TV show a couple of years ago we saw a teenage boy with Asperger’s Syndrome. His traits were so similar to our daughter’s. Routine is important in Claire’s life, she lives by the clock. We always had to give her plenty of warning if we were going to go out. She would never drink out of plastic cups or bottles, always cut the tags out of her clothes and wouldn’t wear certain materials. She hated sun cream, lotions and toothpaste. She would have meltdowns at school if it got too loud or if there were too many people around. We gave up on school discos and sports days.

On the other hand she could unscramble anagrams in the blink of an eye, complete 1000 piece jigsaw puzzles in a day, write beautiful poetry and remember amazing facts about random topics like Ancient Egypt and the Latin language. Socially, she always struggled. Throughout school we’d try to encourage friendships but it was hard for her to interact with kids her own age.

We spoke to one of her specialists about our Asperger’s Syndrome suspicion. “We don’t like to label people,” he said. But, as we discovered as we tried to get her help to find employment, the system responds to labels and without one, the right help is so hard to find.

Finally, thanks to an old university friend of mine, I was introduced to a youth worker who herself has a son with high functioning autism. She told me about a specialist psychologist who could assess Claire and determine if she was on the autism spectrum.

The diagnosis process involved five meetings with the psychologist, each meeting lasting 2-3 hours. I met with her a couple of times on my own to go through Claire’s early childhood history and school life; Claire met with her once on her own and we had a couple of visits together. The confirmation of the diagnosis also needs to involve consultation with another specialist – a paediatrician for children and a psychiatrist for adults.

Currently (and I believe this may be changing soon) there are 12 criterion assessed. They fall into three areas – (1) Social; (2) Language and Play; and, (3) Behaviour.

To meet the diagnostic criteria for Asperger’s Syndrome you must meet three criteria – at least two in the (1) Social category and one in the (3) Behaviour category and you must not meet the criteria for question 2(a) which is around delay in the development of spoken language.

For an autism diagnosis you must meet six or more criteria – with at least two from (1) Social, and one each from (2) Language and Play and (3) Behaviour. Claire met 9 ½ criteria. She was diagnosed with Autism.

We are hoping that this diagnosis is the key that will unlock the doors that will enable Claire to get the help she needs to find a suitable job, get involved more with the community and give her the confidence to lead a full and happy life. Our “official” autism journey is just beginning.”

Comments/RTs/shares welcomed, thanks again to Karen.

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Comments on: "GUEST POST – Adults and Autism" (3)

  1. Great guest post which I’m sure will help other families going through the process.x

  2. Thanks for sending me the link, Karen. I’m glad you did. And I agree about labels, I don’t think we would have gotten this far if my son wasn’t formally diagnosed.

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