Non-diagnosed 17 year old

Thank you Trogluddite. I'm sorry to hear of what you went through during your teens. As you say, it's a hard time for anyone but much harder when there's so much you don't understand going on. 

I'm very glad to hear that you did eventually manage to get the assessment and diagnosis you needed and I hope it's helped you. I plan to write as much as possible down before we go but it's so hard to remember 16 years ago and traits he showed then which aren't there now. Your point about the different diagnostic processes is a very good one and I'll definitely keep an eye on that. 

Thanks for your good wishes.

Thanks for sharing your experiences NAS38983. I'm really sorry your parents weren't able to support you in the way you needed when you were growing up but trust that you're in a better situation now. We were obviously very lucky with my 12 year old as he went straight to a 2 1.2 hour multi-faceted appointment where they spoke to us all separately, took full history and did tests with him, then referred on for the full screening. We're theoretically coming close to the end of the wait for paediatric neurodisability screening - 8 month wait at least - and then I think we go back for review of all evidence. Ed Psych will report at some point too. I sort of assumed older son would get the same. We've waited 20 weeks for this assessment (after the 6 week wait for GP to refer to single point of access, and the 4 week wait for them to decide whether the referral could proceed at all! 

In the ways that you mention, I was very much like your son when I was his age. Academically OK, but very stressed, severe insomnia, and easily overwhelmed socially. It's not unusual for autistic people to experience greater problems during the years of puberty, and I certainly did. On top of the exam pressure, it's a time when the social scene is changing drastically; all of his peers are growing into adults, which brings along with it a huge amount of new social behaviours that can be utterly bewildering. Alliances and rivalries are changing all around him, and, of course, romance and sexual feelings are being discovered. Even the changes in our own bodies as we go through puberty can be more worrying than usual to autistic people, due to sensory and body-image differences. Worse still, because we recognise that we're different somehow to our peers, we feel that we should never talk of these things, or feel that we're being left behind, isolating ourselves from our peers even further.

The insomnia is also very common in autistic people. The early results of a study by Autistica suggest that up to 60% of us have sleep difficulties of one kind or another. Anxiety may be partly responsible, and will certainly make it worse, but for some of us there are genuine problems with how our body clock works, disturbing dreams, or being easily woken if we're sound sensitive. Sleep hygiene can certainly help, but if it's as persistent as you describe, the possibility of a primary sleep condition should be looked into; knowing what kind it is might be necessary in order to tackle it more effectively.

The GP is certainly not wrong that your son is suffering from anxiety, but isn't seeing through it to the underlying problems that are causing the anxiety (many of us late-diagnosed adults have had diagnoses of anxiety, depression, etc. for decades before our autism was recognised.) Although disappointing in the short-term, the hour long CAMHS appointment is a very good opportunity to drive home how serious your son's problems are. You have much more time to get into details which you couldn't possibly at a short GP appointment, and you'll be talking to someone who at the very least has some specialism in psychology, which few GPs do. Although much later in life, this was the way that I ended up getting an assessment referral, after my autism had been missed by multiple doctors and counsellors for decades. It sounds like you've done a good job of identifying the traits that are stressing your son the most; if necessary write them down to cue you during the interview; you need to make sure that they get spoken about, and they'll act as catalysts to get your son talking about the right things.

If you do get the opportunity for a full assessment, which I hope you do, I would enquire whether your son will be assessed as an adult or as a child. The diagnostic tests can be quite different between the two, and childhood assessments can include puzzles etc. which an academically able 17 year old could solve using their cleverness rather than their instincts, so might be misleading. I think they probably would do this, but I've heard of the odd case of near-adults being assessed using very simplistic tasks which were too easy to tell anything much from.

Best wishes, I hope the interview goes well for you both.

Go to the one hour visit and explain the issues your son is having. Normally I'd say they could refer you to the right person for a different intake appointment. It os a long process and I'd try to change GP if you can.

Where I'm from the waiting list for any intake is enormous, unfortunately.

The fact that your son is doing well academically is not related to being or not being ASD. I was performing well, but so stressed out all along. He should be glad to have parents like you who treat him seriously. I was simply told to (wo)man up and get on with it...

And in my experience you get a one hour appointment first in any case. The longer assessments have a waiting list and they usually won't give you that unless they have reason to (costs a lot obviously...).