We had the call from one of Jamie's doctors the other day. He has so many different professionals involved with him, about 11 at last count. Anyway this was the local community paediatrician who had organised the autism assessment. The various bods who had been into school to meet Jamie all met up and decided that, yes, he is autistic as well. I have to say I'm still not 100% convinced. I have a first cousin with Ashburgers (spelling?) and when I look at the two of them together they are so different. For one thing Jamie does what everyone says autistics never do, shows affection. And he looks directly at you when you speak to him, and will come and give you a hug without any prompting. There are autistic traits there. He goes off in his own world, is very obsessive about certain things (although he's never bothered about any change in routine), flaps and 'sings' to himself. I don't know.
The trouble is that Sotos is still such an unknown syndrome. It is quite possible that the autism experts who came to see him have never experienced Sotos. If you read about Sotos it almost always says 'autistic like traits', but it is not part of the autistic spectrum. I would have been happier if a Sotos expert had looked at him and said that certain aspects of his behavior were not Sotos. It would be very easy for someone with no experience of Sotos to assume he must be autistic. The trouble is there are no Sotos experts out there, as far as we know. I just hope the autistic diagnosis doesn't overshadow the Sotos, which I still think is the dominant condition.
We had to cancel the lumber puncture because Jamie developed a really nasty ear infection. He's still on antibiotics three weeks later. His main paediatrician, who was going to do it, decided to cancel until it had cleared up. And as we're off on holiday on Sat I guess it won't happen this side of Christmas now. Still at least it will be done in Barnstaple rather than Bristol.
Just to make the week even more fun thee of the new fish died. The two Rams and one of the Gurami's (not Guppies as I said before) got white spot. They must have come from the shop with it because they had only been in the tank two days. Still a lot of funny blue stuff in the water and a water change seems to have done the trick, the others are all fine. And amazingly the five cats haven't taken the blindest bit of notice of them. I was expecting them to line up with napkins and cutlery!
On a positive note, the sun's out!!!
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7 comments:
Five cats! I thought I was insane taking on four.
Very interesting post. I've learnt a lot.
And you live in Cornwall - I miss it so much.
I have never heard of Sotos i will have to look it up.
Ive just come back from a weekend in Bristol, i was staying with my sister as her son was diagnosed autistic 2 weeks ago. Hes also very affectionate and has great eye contact!
asperger's:0)
My Egg is autistic, and he shows tons of affection. And he looks at me a lot, through choice. I didn't think he was autistic at diagnoses time, as to be honest I just didn't know enough about what autism was, which infuriates me as he was on a nine month waiting list, parents should be given information on autism in that time, I had no computer so I was a bit lost. Plus he was so young, to me. I was all "what three year old has friends?" Now I know more and now he is older(5) I understand.
Everyone with autism is very different, I have met autistic kids that are the opposite of Egg.
I have never heard of sotos before. So thanks! Keep researching, there is sometimes a lot to say for mothers instinct. But the way I was with Egg was that lets go with autism get the help and if its the wrong it will get fixed. I wasn't sure what I thought it was with Egg.
It was first noted with Egg that "something was wrong" 2 months before his second birthday. I think it was when he was 4 and a half that autism clicked for me and he was diagnosed at least half a year before i understood.
Sorry for rambling! I also want to make clear that I am happy with Egg's autism. It's not that I never wanted him to have autism, just that I never thought he did, I always knew he had a special need I just didn't know what. Turns out it's autism and you know what? It's ok!
best wishes
Hi ya, Thanks for popping over to my blog, i will be updating it soon.
My daughter was diagnosed with autism when she was 2 years old but I realised there was something wrong about 18 months, her playgroup thought she had hearing problems at 1 year old, but her hearing tests came back as fine.
It's taken a while but she is comfortable with hugging people she is used too (on her own terms)although she will go up to strangers and hug them but not look at there faces. It shocks some people - a girl coming up to them and cuddling them out of the blue!
It is a myth that autistic people/children don't show empathy/affection many do and they do it in there own way!
Take care x
Crikey five cats! Sorry to hear about the fish, such a shame.
My nephew has Asbergers, he's lovely, but doesn't 'do' affection, if he can possibly help it, and if he does give you a hug, it's only because he feels it's expected of him and is very stiff. Can't say I blame him, who would want to go around hugging loads of ghastly relatives.
I do hope Jamie's ear infection clears up soon, they are so sore.
my son is also pretty affectionate and does make eye contact and is not really very routine. Don't take this diagnosis as a hideous thing. Take it as an opportunity to be able to focus in on what you can now do that can really make the difference. If you ever need to chat or have a question, feel free to email me privately!
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