Suspect DS has autism and looking for resources/support

[Yesterdayyesterday]

DH and I have suspected that DS has autism since he was around 4. He's now 9 and I am even more certain about it. The main characteristics are his obsession with a single interest at a time, and that he gets upset/angry daily over small (to me) issues. For example, he was very upset recently when his friend accidentally took his water bottle home, to the point where we had to go back to his house and pick it up. Another couple of issues which could be related are that he has occasional, small, toileting accidents, and that he has struggled a bit with gross motor skills compared to his peers.

My main concerns are that his mental health may suffer because he may be unable to cope with daily issues/frustrations that he may come across. And also his social interactions. His is friendly with his classmates and plays football at breaktime (which fits with his current obsession which is Manchester United), and he gets invited to the occasional birthday party. However, he doesn't seem to form deeper friendships than this, probably because he mostly talks about Man Utd.

I'm looking to find some resources or support eg books, websites, support groups etc where I could learn about how to support him. I've had a look at the National Autistic Society website but haven't found anything useful really.

I am considering asking the GP for a referral for diagnosis, but I suspect that we won't be taken seriously - DS behaves well at school and is academically very strong.

[CanaryCanary]

@Yesterdayyesterday In our area you wouldn’t meet the criteria for referral for assessment. Sadly you’d have to wait for him to start displaying issues in school as well or they would refuse to assess.

It’s really common for autistic kids to do ok throughout primary school (they mask in school and the issues come out at home). Then once they get to secondary school it’s a much more challenging, demanding environment - add in teen hormones and you can see everything fall apart really suddenly.

Any chance you can afford a private diagnosis? You’d be looking at about £2k.

[CanaryCanary]

(Just to add - in our area even once a child is accepted for assessment on the NHS you’d be looking at a wait of about 2 years, maybe more. So once issues at school start showing you then have a really long wait before you get a real answer).

[Yesterdayyesterday]

Thanks @CanaryCanary . I hope that maybe in our area he will be considered for assessment. Unfortunately I will have to wait several weeks to get a "routine" GP appointment. I have no idea what they will make of his toileting issues - this at least I think they will need to address.

The only issue we've had at school is that the teacher said at the last parents evening that DS has been getting angry with older kids when playing football. Eg if there is something controversial or they don't play with the rules then he gets quite upset about it and angry to their face. Not physically aggressive though.

We can afford a private diagnosis but I want it done properly and I hear you have to get multiple different HCP opinions? I don't know where to start really. I also don't know whether to tell DS that we are seeking this diagnosis, or keep it private?

[CanaryCanary]

@Yesterdayyesterday - the key thing is to check that the private assessment will follow the NICE guidelines- so long as it does then the NHS should accept it.

The assessment centre will arrange any experts they need to consult.

We have one child already diagnosed (privately, no issues with NHS accepting it) and also have a 9 year old who is going through the process in the next few weeks: he knows that we are talking to experts to understand how his brain works better, to help him as he’s finding some things difficult. He also knows they’ll want to have a chat with him.

We haven't specifically said they’re considering autism as they may decide he doesn’t meet the criteria. If that’s the case they’ll still give us a report highlighting areas he finds difficult, so we’ll still have that information.

So I just said we’re finding out more about his brain, because everybody’s brain works differently. I think that’s less confusing at this age than referring to possible diagnoses.