Worth pursuing a diagnosis? ASD

[TheFloatingLotus]

I'm in a bit of a quandary with looking into an ASD assessment for my 10 year old and hoping someone here might have any advice.

Some background: My partner is about to be assessed for ADHD and we're reasonably sure both ASD and ADHD are in the wider family. This means we have been discussing these things a lot within our family as we've gone through the process of tests and applications for assessment, and been pretty open with our son about what's going on with Dad etc.

My son has now asked for an ASD assessment for himself - unprompted - but within the context described above. We have wondered ourselves as parents for a couple of years now, but the things that have made us consider it for him have been very subtle, and mostly nothing that has disrupted his life or education too much.

Since he asked us, I have contacted our GP and we are due an appointment to talk about it shortly. We had mentioned the possibility previously with school during a bit of a rough period for him socially, and they have been lovely and very supportive, but ultimately left it up to us to decide on pursuing it any further.

I will obviously attend the GP appointment, but feel a bit confused as to what I should say. This is definitely coming from our son himself (which I realise is probably an indicator in itself) and I am trying to be a good advocate for him, but worry that his traits aren't disruptive or pronounced enough for him to be referred. He is very quiet and rules-orientated, and absolutely hates attention or fuss. I don't doubt he has some of the diagnostic traits, but I do doubt that they would be considered severe enough for him to be diagnosed.

Anyone else been in a similar situation? Any advice as to next steps? How do I talk about this with the GP?

I'd start the process if I were you OP. It's a two year wait in our area and the list gets longer everyday. I filled in the paperwork last year when my dd's senior school asked if she had a diagnosis as they had concerns over how she was settling in and interacting (or not) with her peers. Since then the little things have grown, I can hardly recognise dd as being the same person as they've been through a period of burnout and have stopped masking as much, they are sure they are autistic, as am I.
Better to be on the pathway now and have school take things into account and prevent issues escalating than starting when things get worse and have a massive wait. Good luck xx

Talk to the school and ask for the jade's pathway paperwork. We did ADHD as well as dd shows strong signs of both. There's a bit for you to fill in, a bit for the school to fill in and then it goes to the GP. They fill in their part and it gets sent to the child development centre. Then you wait. We've also had a questionnaire that Dd had to fill in for ADHD. The wait times are shorter for that in my area, they've already had a Qb test and we see the paediatrician in a couple of weeks.
Be aware that it's really quite emotional going through the multiple choice questions and writing down all of the things you've noticed them do, the way that they act etc. it took me far longer to fill in than a few sheets of A4 should've...

ASD assessment from CAHMS is a 4 year wait in our area and from what you’ve described here it was would be rejected. If you’re asking for referal write down every potential behaviour of concern.

This pathway/process is specific to your area. Each area have different processes, so this may not match OP's scenario. It's a silly system.

Thank you - we are definitely taking steps and I am aware things can get a lot worse when there's stress - and teen years / school transition are looming! I'm sorry to hear your dd has had such a tough time.

I think I'm just underconfident about reporting the points of concern and whether they would add up to much from the referral perspective.

Like others have said above, I would definitely start the process now given how long the wait times are. You may find that your son is masking a lot right now and as he grows and the social demands of school and peer relationships develop, his traits could become more apparent.
I have two high masking autistic boys. My eldest had traits from birth - liking routine and getting upset around change, full on special interests, early reader with extensive vocabulary, but hard to understand out with our immediate family, very limited interest in friendships when they did not fit his purpose etc. However, none of these impacted on his life or education, his needs were being met and he was happy. However, as he reached puberty and with the increase in social demands and changing dynamics of school/peer relationships, he could no longer maintain the level of masking he had been subconsciously maintaining and he hit burnout and it was obvious that the degree and intensity of his autistic traits were having a massive impact on his ability to function. I really wish I had known more at a younger age so we did not have to wait so long for diagnosis and support.
As a family we have learned a lot about neurodiversity since then and we talk openly about it and it is part of who we are.
This has vastly improved things or my youngest, who actually did not show any autistic traits in his younger years with the exception of struggling to sleep, he was, so I thought, a pretty balanced kid. However, things started to unravel around age 8 and because of his awareness of autism from his brother, he was able to say the things that were challenging to him which to be honest, we would not have picked up on ourselves such was his level of masking. He has now been diagnosed and no longer feels the need to mask. I would say if you have even the slightest inclination and if the child is asking himself, there is something there worth pursuing. You are correct in that there has to be evidence of the depth and degree to which autistic traits are impacting your life, but good diagnostic assessment these days should also take account of masking and it definitely is possible for boys to be high masking and not just girls, particularly if they are empathic. I have also read that people who are AuDHD are much more likely to be missed for diagnosis as although they have traits of both autism and adhd, it can sometimes look like these cancel each other out and it is harder to spot. Just a thought. Trust your instincts.

Thanks, hopefully the GP can at least give us the process in our area so we know where we stand with that.

As to the emotional stuff - thank you, yes that makes sense (and I guess in truth partly why I'm already finding it difficult to think about it all). A friend went through similar with one of their kids recently and found the school report very hard to read.

Thank you so much for the detailed response. What you write feels familiar - since we've started discussing this all as a family, our son has been sharing some things he struggles with, or does when he's stressed, that we have simply never picked up on ourselves. He has always been extremely self contained - even as a toddler - but I was very shocked to realise that he has obviously been hiding some important parts of himself from us for so long.

He has started going to a specialist kids support group that he's really enjoying (another thing he asked for!) so I feel like we are doing more of the right things for him, regardless of how the GP appointment or a referral goes.

Thank you to everyone who has taken the time to reply, it really is appreciated and is helping me to feel a bit more confident about the next bit :)

I too would request a referral now. Rather than rely on the GP, you should be able to find the local process via google. That way, you can’t be fobbed off. You could also look at Right to Choose if you want.

Also, speak to the school’s SENCO.