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Coping with Autism
Member Name: rosebud2001
Date: 04/02/09, updated on 15/06/09 (398 review reads)
I first became aware of it when my nephew was diagnosed at the age of 8 with Aspergers Syndrome. I live some distance away from him and I recall seeing him when he was 4 and it was patently obvious to me that he had issues of some kind - he refused to look me in the eye, wasn't particularly communicative and frequently asked me to "shh" by putting his finger over his mouth.
I remember mentioning to my mother that there was clearly something wrong, but my mother, in her usual ostrich-like fashion, poo-pooed the idea and refused to mention my concerns to my brother. I did, however, mention it to my husband and he suggested it could be autism - he was aware of the disorder from knowing a family with an autistic child in his youth.
When I had our daughter, the MMR and autism debate was in full flow and I had read up on Aspergers and autism at the time - mindful of the fact my nephew had it I was hoping and praying she wouldn't be affected.
However by the time she was about 18 months old it became obvious to me that she wasn't developing as she should. She was a late walker, and she refused to play with her toys in an imaginative manner - she would merely line them up neatly and then knock them over. This, to her, was "play". She would only watch the Teletubbies on TV - and even then she preferred the same episodes on video over and over again.
She refused to toilet train, didn't like crowds or loud music, and preferred her own company to that of anyone else. She was also completely non-verbal. It became glaringly obvious to me that she most likely was autistic, but I then had to endure some hostility within the NHS in order to get a diagnosis.
There is a widely held belief that if autism is diagnosed early, and therapy is offered promptly, that the effects of this "early intervention" can lessen the effect of autism. So with this in mind, I was determined to try to get a diagnosis as soon as possible.
Unfortunately I came up against a paediatrician who didn't believe in early intervention and who was extremely reluctant to diagnose my daughter. She was insistent that my daughter had hearing issues, and therefore set her up for hearing tests. Now these tests were conducted using old and heavy instruments and my daughter refused point blank to have the earpieces put in her ears. The paediatrician ended up cancelling the tests in frustration, and referred my daughter to a prominent audiologist at St Mary's Hospital in London instead.
This was the breakthrough we needed - the audiologist spotted almost immediately the fact my daughter had no hearing problems whatsoever - she was, in fact, autistic. Once she made this declaration, the paediatrician had to bow to her greater knowledge and therefore a couple of months later, just before my daughter turned 3, she was formally diagnosed with autism.
Autism affects people in many different ways - which is why you will frequently hear it described as the "Autistic Spectrum". Aspergers Syndrome is at the high functioning end of the spectrum - at the lower end people will need full-time care for all their lives. I have encountered people at all ends of the spectrum, and also children who seem to have been labelled autistic when they weren't - they were just sadly deeply mentally disabled and needed constant supervision and care.
Autism means you view the world differently to those around you. You tend to take literally things people say - idioms, for example, can be akin to a foreign language. Body language and facial expressions mean nothing to you. It is a neurological disorder and there is no known cure, and its unknown what causes it.
I already mentioned the MMR debate and I had taken the precaution of ensuring my daughter had single vaccines rather than the triple jab. In my case however it made absolutely no difference and it strengthened my belief that autism is caused by genetic or environmental factors, rather than a reaction to any vaccine. I do, however, concede that lead contained within vaccines may well be a factor in autism. Happily this practice has now been abandoned.
One of the reasons people linked MMR to autism is the timing in which a child "switches off" with the disorder. It tends to happen around the 18 month to 2 year mark, which is exactly the same time MMR is administered. Less well known however is the fact sometimes children regress at around age 7 and a lot of progress made becomes lost.
My daughter started at a special school specifically for children on the autistic spectrum when she was 4 and she thrived in the environment. I was also fortunate enough to get her some psychotherapy through the NHS which was exceptionally helpful at getting her to understand some of her basic emotions and also made her more tactile as a person.
We also paid to send to her to a wonderful establishment in London called the Speech, Language & Hearing Centre, which enabled her to get Occupational Therapy and Speech Therapy.
As a result, not long after her 5th birthday she finally started to speak and she became fully toilet trained.
There is no cure for autism - but children do develop. There is a school of thought in the US, perpetrated in the media by Jenny McCarthy regarding her own son, that the condition can be "cured" - but its something I strongly disagree with.
Children with autism will develop and will outgrow some behaviours. For example, my daughter used to "stim" a lot - for her it was flapping her arms, for others its walking on tiptoes, headbanging or punching. She stopped doing it by the time she was 7 - by that time she had outgrown any usefulness she derived from it.
People who claim their children have been "cured" tend to cite the fact their children are toilet trained, can speak, can read or write and have stopped "stimming" as proof the disorder has vanished.
This is extremely disingenuous - my daughter is now 12 and attends a mainstream school and has been able to read and write since around the age of 6. However she is still autistic - she is incredibly immature for her age, has only one friend, is still happiest on her own, dislikes social situations and meeting new people and still finds basic eye contact extremely difficult. She is extremely impatient, very blunt with no understanding of the intricacies of tact, and still throws tantrums that would put a 2 year old to shame.
So I could never say she has been "cured" - she has merely developed thanks to the care and guidance of many professionals over the years, and the fact she has had the good fortune to be taught by some outstanding people.
It can be difficult to access these professionals but my advice is to persevere for the sake of your child. I learned this because my nephew's late diagnosis completely blighted his education and formative years so if you suspect your child has autism, push for a diagnosis as soon as possible.
Autism isn't a death sentence - it just means your child's life is going to be different than you had hoped for. That in itself isn't the end of the world and despite the challenges I face bringing up my daughter I love her as she is and couldn't imagine her any other way. I know I will continue to face challenges with her as she gets older but the more people learn about the disorder and mix with those who are affected by it, I hope that people will become more tolerant of it, and of her.
Summary: My experience of autism in the family