Here are some suggested organisations that offer expert advice on special needs.
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Managing suspected ASD(10 Posts)
Our GP is refusing to refer Ds(7) for ASD diagnosis, husband and I believe that DS fits perfectly the description of (what was) Asperger's. I have suspected ASD since he was tiny but really the only noticeable aspect in a brief meeting is no eye contact which GP states is normal, despite DS not looking at him directly once whilst they talked.
I struggle with DS's defiant behaviour which I believe comes from a place of anxiety.
Can anyone recommend a "user manual"? I figure if I try and manage him like a diagnosed ASD child then that might help us. Any bed time reading (screen free!) people think might help?
Sorry no screen free recommendations but lots of information here:
What particular difficulties does your son have? Autism is a very broad spectrum so what's relevant will vary a lot from person to person.
I learned the most practical suggestions from Facebook support groups. I also looked up PDA techniques (although DS doesn't have PDA he is demand avoidant so they were useful).
* Have you spoke to the school?*
Yes, he's on their radar and they support going for an assessment
I was just going to recommend the PDA Society. They have a Facebook page, local groups, and parent training videos, all of which we've found really useful with our extremely demand avoidant DS. It's so hard in those appointments. DS, aged 3.5, went to see the paediatrician and EP and behaved so incredibly social, playing games and turn taking and laughing in the right places. I got looks of, so what are you doing here? Thankfully the preschool had detailed information that helped and I kept a diary of everything that helped too (e.g. all our adjustments that seemed normal but were actually indicators, restrictive eating, sensory stuff etc.). He still only got diagnosed with autistic traits and only got his actual asc diagnosis last year. We think he has PDA but it's hard to get that recognised in the diagnosis so we have the wording 'extremely demand avoidant' in his ehcp.
One thing it could be worth doing, which I had to do recently, is to sit down and write out all the steps it takes to accomplish an everyday task e.g. to get your DS dressed or out the house or walk to the shops etc. I think this can highlight the extra support you have to provide and the levels of need as a result of demand avoidance. E.g. to get my DS dressed in the morning, I have to get his uniform out and 0lace it on the lounge table, leave it for a while, then I say that it's there for when he's ready and I'm here to help, then we gently edge towards getting dressed. Any demand causes a total blow up! Imagine saying 'right DS time to get dressed' and the reaction, however that is what most people do, so we are going beyond that in order to help our children. For my DS, we think the demand avoidance comes from anxiety at not being able to predict what happens next, due to his autism, so we have lots of routines with set times in them to help him predict things and lessen the anxiety. Although of course all the routines are set by him as otherwise he wouldn't do them!!
@MrsDuBeke that sounds like DS to a T.
Getting dressed is a huge issue. Especially for school because he doesn't want to go. I will look at the PDA society.
I don't know how to phrase it but I know he isn't typical 🤷♀️
The PDA stuff is very useful. I wouldn't say DD is all that demand avoidant but when she is/to the extent that she is it definitely comes from a place of anxiety and the PDA techniques and mindset is good.
Ross Greene's stuff may also be useful (very similar mindset: children do well if they can). The Explosive Child is more SEN focused I think: I've been reading "Raising Human Beings" which is more general but very useful.
@beepbeepbonk ask for a second opinion from a different GP. Even if your ds had perfect eye contact he could still be autistic.