I’ve chosen to share Jamie’s story as he has very ‘untypical’ autism in many ways but he is not classed as having high functioning autism either. I find this very confusing and I suppose I am searching for answers or another story similar to Jamie’s.
Jamie was born by emergency c-section after a very long hard labour. He did not need any special care. We were told however that Jamie was a ’10 month’ baby. I won’t go into the details of the labour but I am 99% positive that Jamie suffered from lack of oxygen in my womb through the labour and of course I often question if this could have resulted in some type of frontal lobe damage etc resulting in his autism but I guess we will never know.
Jamie is my first and only child so I obviously took all his behaviour, etc. as normal as I had nothing to gauge him against. Jamie was a difficult baby; he did seem to cry a lot and hardly ever slept at first. By 7 months old I moved him into his own room and he then began to sleep a lot better.
Now, this is where I scratch my head. Jamie hit every milestone on time or before: sitting up, rolling over, walking at 11 months, eating solids at 7 months old. He showed nothing that would concern me whatsoever. He cooed, he laughed, he giggled, he had good eye contact, he played peek-a-boo, at times he didn’t respond to his name but I didn’t think anything of it.
It was only when Jamie reached about 18 months old that certain things concerned me. He had not spoken a word yet, he never pointed or waved. He didn’t seem to understand what we were saying to him at all. He spent hours every day lining his toys up and scanning the line closely with his eyes. He walked everywhere on tiptoes and his eating had become extremely rigid. He would not eat anything that had lumps in it; all food had to be smooth. He would also have these extreme temper outbursts, hitting himself, head banging walls, biting himself in anger.
I called up my health visitor, mainly about the concerns with his lack of talking, and I kind of put the rest down to his age. She ordered a hearing test which came back completely normal. She then referred him to an under 5 teaching programme where a lady came once a week to do ‘constructive play’ with him. She must have seen something I hadn’t as she then referred him to a speech and language therapist who then referred him to a physiologist. Eventually he was referred to a pediatrician who then diagnosed Jamie with ASD at about 3 yrs old.
At age 3 years Jamie still could only say 1 word which was ‘No’. He still did not point or wave and he was still behaving like I previously mentioned. He started attending a special needs nursery and a small mainstream preschool.
Jamie is now nearly 5 years old and I am so proud of his progress. In just two years of starting his pre-schools he can now name most objects and animals. He knows all his colours and can count up to 5. He interacts, plays and shares with other children just as a normal child would. He can now speak 3-4 words together to make a sentence. He has excellent eye contact and can be very affectionate. He can also write his own name and has shown to be above his age on building and drawing!
He starts his special needs school in September. I chose a special needs setting over mainstream because although he seems a very typical 5-year-old boy in a lot of ways, his language and comprehension is at the 3rd and 1st percentile for his age and I feel he would struggle to follow a standard school curriculum.
Jamie still lines toys up and scans them closely with his eyes. He still has a bad temper—not so extreme now but he has an extremely low tolerance for waiting or any mishaps in his play or routine. He is still in nappies and still needs help with dressing and cleaning himself. He still walks on his tiptoes and he still eats very little. I have noticed that recently he covers his ears occasionally when he hears loud noises but I think this depends on his mood at the time. I now know that Jamie does understand what we are saying to him most of the time. Now that he can talk, he tends to repeat words over and over again and requests that you ‘echo’ his words too. If we don’t, we are in big trouble! LOL!
When Jamie was diagnosed with autism and I read what that meant I kind of lost all expectations I had of him, but every day he surprises me, and every week he learns that little bit more. I don’t know how independent Jamie will be when he is older but he’s certainly shocking us all already!