If you have been following my blog, you will be aware that my 14 year old son was diagnosed with high functioning autism when he was 3 years old.
Like many people, I was not fully aware of all the ranges of autism, to me an autistic child was one that was non verbal, would spin things in circles, have no communication with the world in any form etc etc..looking back I now know how ignorant I was. I do not feel ashamed about the view I had, I had never been told any different, nobody had made me AWARE.
To me, that is what Autism Awareness day is all about...making people aware of all the differing degrees and aware that just like 2 non austic people are never the same, neither are autistc people. They all have their own personalties, different sensory issues, and different interests.
I knew that my son was "different" from a young age. As a baby he had been very sociable, laughing, loving attention,good eater, a joy to be around. However he was always ill, ear infections, chest infections, skin infections, virus's, chicken pox, suspected meningitis...all before he was 12 months! It was after his 1st birthday that things changed..was like somebody had come and taken my child away and swapped him with another one (close friends said the same)
He stopped saying the few words he had, he screamed if anyone he didnt know spoke to him, he screamed if music was on, he screamed if one of his siblings sat next to him, he lost all eye contact, stopped sleeping and would hardly eat. There were also all the screaming fits where I had no idea at all what had upset him. Cars got lined up, infact everything got lined up. But he was amazing with jigsaws and could finish one he had never seen before in minutes.
Luckily I had a great health visitor and gp, they knew me and his sisters well , so when I voiced my concerns they were not brushed under the carpet. When he 2 he was given a place in a childrens centre 2 days a week where he had 1 to 1 from a wonderful key worker he got very close to, and was referred to the childrens hospital to see a leading consultant in autism..I was so scared when the word autism was first mentioned, like I said, I didnt know much about it.
Over his time at the childrens centre things gradually improved..he began to talk, ok not much at first, but was a start, his key worker got him toilet trained during the day (something i had had no luck with) and I began to learn the things that triggered the screaming, so life began to get that little bit easier.
Just before his 3rd birthday, he was formally diagnosed with "high functioning autism".In one way I was relieved, it was now official it was not "my fault" (something a lot of parents feel when no one can explain why thier child is behaving in a certain way), but on the same hand it hit me like a ton bricks and I went about in a daze for many days to come. We got a social worker who arranged respite one Saturday a month so I could go for days out and spend time with my daughters without having to worry about C wanting to go home. An organisation called Spectrum came for home visits to give me advice, and went in to the nursery attached to the local school to show them how to make C's time their easier, and he got an auxiliary for his time there, so he had 1 to 1 attention.
He came on leaps and bounds and was statemented in readiness for starting school , the auxiliary to remain with him..then we moved to England...but thats another story, lets just say the help and support vanished over night.
C is now at high school, coping way better than I ever hoped, doing great in class and loved by all who know him. Ok, he still only eats about 10 foods, he still hates baths, washing his hair and getting it cut. He still has problems understanding why us non autistic people act like we do , still takes a lifetime to choose when given a choice and still hates the feeling of new clothes on his skin...BUT he HAS grown up, has ambitions of being a computer game developer, makes us laugh, has developed a dry sense of humour..and yes, like other teenagers his age knows exactly how to wind me up! lol.
So if is there were two things I would like to see come about from Autism Awareness Day, would be that the next time you see a child screaming at their parents in the supermarket, a mother having to drag her child along the street while dodging the kicks and punches, a child who says what they think appearing to be rude..that you just stop and think for a second that that child may not be acting that way because they are spoilt, badly behaved etc , they may have autism.
Second, if you are reading this as one of those parents who "knows something is not right" and nobody will listen to you..NEVER give up, you know your child better than any doctor or professional.
Thank you for taking the time to read my post. If you would like to learn more click here for The National Autistic Society
2 hours ago