I have mentioned before that my son is autistic. He's now 18 and attends a foundation course at a local college. He has very long hair, dresses like a goth, enjoys heavy metal and power metal music, adores Transformers and Japanese anime. He doesn't think he has autism - he thinks he is perfectly normal. In fact he thinks everyone is trying to pigeonhole him into being a person with special needs when he feels he is just fine. This can be a problem as he shrugs off help of any kind and will not accept that he is a bit different.
I knew before he was two that something wasn't quite right but I didn't know exactly what was wrong, it just seemed strange that he didn't have any interest in talking. I actually thought he might be deaf but he was checked and found to have normal hearing at around 20 months. It was a real struggle to get anyone to take any notice - the health visitor said he was "a late developer" and the GP wasn't really interested.
Sadly, worry about my son's development took a back seat as just before his 2nd birthday he was scalded on his chest and upper arm which involved weeks in hospital and months of dressings and eventually pressure garments. In addition, around the same time my 4 year old daughter was diagnosed with a blood disorder that we battled with for the next 7 or 8 years. On top of everything, we also moved house, but at last I found a new health visitor who was more inclined to listen to my concerns about my son's development, and we were referred to a paediatric consultant who tried in vain to assess him. My son either couldn't or wouldn't co-operate, but finally there was recognition that something was not right. He was referred to
a children's centre where he had weekly speech therapy sessions; there was very limited progress, and eventually at age 4 he was referred to an educational psychologist. She told me then that he had an Autistic Spectrum Disorder and decided that he would need to go to a special school where they would be able to carry out further assessment.
I knew before he was two that something wasn't quite right but I didn't know exactly what was wrong, it just seemed strange that he didn't have any interest in talking. I actually thought he might be deaf but he was checked and found to have normal hearing at around 20 months. It was a real struggle to get anyone to take any notice - the health visitor said he was "a late developer" and the GP wasn't really interested.
Sadly, worry about my son's development took a back seat as just before his 2nd birthday he was scalded on his chest and upper arm which involved weeks in hospital and months of dressings and eventually pressure garments. In addition, around the same time my 4 year old daughter was diagnosed with a blood disorder that we battled with for the next 7 or 8 years. On top of everything, we also moved house, but at last I found a new health visitor who was more inclined to listen to my concerns about my son's development, and we were referred to a paediatric consultant who tried in vain to assess him. My son either couldn't or wouldn't co-operate, but finally there was recognition that something was not right. He was referred to
a children's centre where he had weekly speech therapy sessions; there was very limited progress, and eventually at age 4 he was referred to an educational psychologist. She told me then that he had an Autistic Spectrum Disorder and decided that he would need to go to a special school where they would be able to carry out further assessment. He was so difficult in those years, constant tantrums, impossible to communicate with, but so beautiful he could make your heart melt. He spoke in "echolalia", repeating parrot fashion whole episodes of Thomas the Tank Engine, but couldn't ask for food or drink, he had to be buttoned up tight and covered from neck to toe, couldn't bear to wear a tshirt or shorts in the summer and never went anywhere without a hat on. He would never try anything new - food, games, TV programmes, activities - even hated wearing new clothes. He lived in a little world of his own, almost as if he was a cartoon character - I'm sure he wished he was Toby the Tram.
To cut a long story short, I never imagined the little boy who lived entirely in the world of Thomas, Toby and James, would ever grow up to have any kind of independent life. It may be some years yet before he'll be able to live on his own, but he can travel to Colchester on the train by himself, can cook his own meals (a limited menu at the moment, but he's learning) and shops for his own clothes and music. Admittedly, he doesn't have good social skills but he has lots of online friends that share the same interests as him and most of the time he's happy. He loves shopping but is absolutely hopeless with understanding money though he functions well enough with a bit of help (he can always phone me on his mobile to ask if a £10 note is enough to buy something for £7.50!). And he is now one of the most talkative people you can imagine (admittedly, he loves to talk almost exclusively about things that interest him) but what an enormous change from that silent little 2 year old.
We didn't have a great experience with education; the local provision didn't really meet my son's needs at the time, but I'd like to hope things are improving. The National Autistic Society's campaign Make School Make Sense asks for improved training for teachers and better provision of schools. I hope that in time there will be more support for people with autism and their families. As the song goes: things can only get better!
We didn't have a great experience with education; the local provision didn't really meet my son's needs at the time, but I'd like to hope things are improving. The National Autistic Society's campaign Make School Make Sense asks for improved training for teachers and better provision of schools. I hope that in time there will be more support for people with autism and their families. As the song goes: things can only get better!
3 comments:
Hi Denise,
I found your blog via down to earth (I lurk).
I was delighted to read about your boy. My son is 8 next week and goes to a special school. He started talking at about 3, and now he talks - a lot - about what he is interested in, of course. I was told he will probably be an independent public transport user. It is great to read how an older boy is doing.
Ann.
Thanks so much for writing this Denise. My little boy is nearly 6, severely autistic and still has no speech. We had a similiar experience with trying to get to the bottom of the problem when he was 18 months and it was a hard and stressful time although admittedly we got a diagnosis in a shorter time than you - I'd like to think that this shows there is better provision than 12 years ago, maybe! I find it so helpful to read about the experiences of other families - it gives me hope for our future too. What a beautiful picture of your son as a child - he has such a sweet and innocent face. It sounds like he's come far.
What a brave blog to write. I do not have an autistic child but live next door to an 8 year old who is and am constantly amazed by the struggles faced by his superb parents. I'm so pleased to hear that your little boy has grown up so well. It gives so much hope to those who are at the beginning of the long journey to adulthood.
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