Here some suggested organisations that offer expert advice on SN.
Autism Diagnosis(29 Posts)
I've posted this last week but in the Education SEN board so just thought I'd post here ....
Not sure if this is the only SEN section but seems a lot of similar stuff.
DS (10) has recently been diagnosed with autism.....after I got the GP to refer him to a private paediatrician and clinical psychologist. However, he was referred for a PDA assessment but they did a general autism one, including ADOS-2 (don't have the report for that yet) but ruled out PDA.
Their reason for ruling out PDA was because he was biddable as a toddler however, people on the PDA Society forum say their children were also biddable as toddlers because the pressure put on them was less (I.e. No school). We feel that most of his behaviours are demand avoidance.
My worry is that is just says autism and not Aspergers or high functioning autism etc. It also says he has sensory processing disorder (we kind of guessed that) and other writing problems but to me, 'autism' describes classic autism and suggests (or perhaps I'm totally wrong) that the child has learning disabilities rather than being very able but has learning issues. For example, he didn't have speech delay, he walked early, he is very tactile to friends, he has good eye contact, he understands emotions, he understands sarcasm etc. In fact, school didn't even notice there was anything than neuro typical behaviour.
Any ideas? Will the ADOS report specify something more than simply 'autism'? I thought perhaps that because Aspergers has not been included in DSMV they have just used the whole, generic term of autism?
Yes thanks poltergoose. I got the DSMV the wrong way round. Yes, it's the ICD10 that still uses Aspergers.
The thing is, he doesn't really appear to me to be a classic Aspergers child either. He had speech therapy in preschool and reception yr one but that was for common speech problems (pronouncing word beginnings and ends) rather than speech delay. He has no intellectual disability so it worried me that they simply said autism, rather than being more specific. His most obvious issues are sensory.
I think it's probably more that you know little about autism. Autism DOESN'T imply learning disability (I assume you mean low IQ, it obviously impacts learning), neither incidentally does language delay/disorder. Autism means you have those deficits/differences that fit that criteria. You can be clever or not, cuddly or not, gentle or not...basically as diverse as the rest of the population.
I too am baffled by the choice of DSMV rather than ICD . My ds was dx'd with ASD this term, but the ASD was to imply "not as bad as autism". Which I find bananas, though I agree his ASD is not that severe.
Yes, I think you're right. Thank you.
DH is finding it hard to talk about I think. He hasn't yet said DS has autism. He also doesn't want me to talk to my friends about it in case they mention it to others and it gets around at school and his mates find out. He says he doesn't want him being labelled. I truly believe that unless we have a 'label' (diagnosis), we won't be able to access any helpful support.
Think DH is just carrying on as normal and brushing it under carpet......although I've noticed he is being much calmer with DS and is able to see the autistic behaviours now as opposed to assuming it was naughtiness.
Have you both seen this?
Yes I watched Rosie's video the other day. Lovely girl and a fab video.
"Send in the Idiots" details the lives of several children who all went to a specialist nursery/school. The author has aspergers and went back to find out what happened to his class mates (he is a speech writer Whitehall I think). I thought it showed very clearly that family attitude had huge impact on outcomes.
Temple Grandin has some good lectures on u tube
The great thing about the Rosie video is it shows several different presentations (none like mine but interesting).
I've just written a really long (and boring) reply and lost it!
My ds has HFA/PDA.
In school he looks NT (has "naughty" outbursts due (IMO) to sensory overload), he copies his peers and does everything they do. From what I've read from other parents, this is quite common.
He passed the threshold in his ADOS assessment, but this, and our ADI interview (which he also "passed") were ignored because his behaviour in school was deemed too sophisticated to be ASD. This seems to be fairly common with PDA. The ADOS report only mentioned autism, nothing else.
We also had a problem with PDA because 1) no-one at our cdc believed it to be real and 2) some diagnosing professionals will only accept it as extreme avoidance at all times, when for many it's something that fluctuates with anxieties, ds will go through relatively calm periods where we can start to very gently build the demands, then go through very anxious times where we can't get anything out of him (apart from a decent line in swear words!).
Ds was also biddable as a toddler and up to being 6 when all of a sudden he fell apart spectacularly - this is also something I read about happening to other dc with PDA.
Like your ds, mine never "fit" asperger's. Reading about PDA was a lightbulb moment that described him almost perfectly, and I think the PDA diagnosis is very important so he gets appropriate support.
Sorry, my other reply was much better than this (bad night, have steadily been working my way through a glass of wine).
Ugh, sorry, ignore my reply, it's not helpful at all!
Back to the wine.
Zzzzz, when I said intellectual disability, I had used someone else's words on my other post.
My cousin has very severe autism and has the intellectual age of a much younger child than he is and will never have a life without round the clock care.
My son in comparison, is not intellectually impaired other than not understanding how to quantify time very well and finding writing difficult. To my DH, the autism my cousin has is not the same as our son has and DH just assumes everyone will think the former rather than the latter. He isn't ashamed of him.....just doesn't want people to treat him differently.....although I'm pretty tired of people close to us assuming he is being defiant and naughty, when he is clearly just uncomfortable and anxious.
Phil on the contrary, your reply was very helpful. Your DS sounds identical to mine. DH and I still believe that he has PDA but for now, as someone on the PDA Society website said, a diagnosis of ASD is better than no diagnosis. I kind of agree but perhaps in the future, we will be able to have him reassessed as behaviours become more, or less, obvious.
I'm not offended Verbena. It's hard for people to understand that you can be severely language delayed or disordered and yet have normal or extraordinary IQ. We associate intellegence with eloquence and lack of intelligence with stumbling communication.
I think there is an element of shame if you feel the need to hide dx, but I don't know how your dh is feeling or what his true motivation is (and don't think it's any of my business). People with autism are a diverse bunch and have more in common with their families than with each other.
If you're on FBI there are a couple of PDA groups that are good for day to day support and advice, and just seeing that there are others going through the same things.
There's a global group and uk group.
I'd agree that a diagnosis, even if it's not a prefect fir, is better than none. PDA can always be investigated more if you need to.
I don't think it's shame. I think it's sadness that his life won't be as easy as it could have been (whatever 'easy' is in this strange world of our's). He says he just wants us to have support put in place at school (which tbh won't be anything major based on his current behaviour) and he doesn't want him to be bullied because of ASD....which is why he is reluctant to discuss it with anybody. He himself thinks he could have mild ASD and the more I think about it, the more he fits that neuro atypical pattern of behaviours.
The book "My daughter' snot naughty" is very good, very easy to read and gives loads of straightforward strategies that work.
Oh for goodness sake. My Daughter is not naughty.
I think it's sadness that his life won't be as easy as it could have been I think it's important to know that dx is not a prediction. He is no more likely to be sad or bullied with dx as he was without. Dx protects him in that incidents should be treated more seriously, but he's just the same chap with the same future. Mine is 10 too, I think there is the normal worry about transition to secondary rolled in there too.
With a more verbal and aware child hiding dx has the potential to make them feel it is something negative which I think is to be avoided at all costs.
Yes zzzzz I feel like that too.....that by hiding his dx, it will make negatively affect his feelings about it. I have explained to him that he can either tell people or choose not to and that's it's entirely up to him. Bless him.....when we explained his dx, he said "so I'm not normal then? I knew i felt different". It's a relief.....and actually, he hasn't asked me to kill him since the dx....something he regularly asked me to do because he couldn't understand his melt downs and the only way in his head that would sort out his awful feelings, was for me to kill him so hard to hear your child ask that.
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