Published on 12, July, 2020
Hi all,
I finally at 33 decided after some of my own research to ask my GP for an assessment referral as my family/close people have for a while been telling me I'm "on the spectrum" and pointing out things I've always done. Things had been stressing me out masking and negatively stimming (I think that's the right term?).
My GP luckily agreed some of my list of noticed traits/habits were typical autistic traits and some could have been obsessive behaviours so referred me.
The more I researched about autism the more I recognised things in myself and the more I felt I identify with autism and want to find support.
My worry now is that:
A) I've read a lot about long waiting lists and I stress and get anxious a lot waiting for important things.
B) I will have a negative assessment and be shot back down to struggling with my "quirks".
I'm partially starting to regret the referral now as I've felt extra self conscious after researching and asking those close to me to discuss what issues they've noticed about me but I feel a positive diagnosis would really help me.
Has anybody got any advice here as I'm feeling super stuck and stressed.
I've been reading that you should bring someone who's known you since childhood to the assessment but I can't decide who that should be.
My parents are VERY different people and divorced. One of them is very level headed and tends to play things down and the other tends to be over the top and critical. Part of me feels the one who is more over the top and critical is more likely to put across issues she can remember about me. On the other hand, maybe the more level headed one could be more focused but I fear they might want to play things down too much and not be too helpful for the assessment.
I don't really have anybody else I've known since childhood as I had trouble keeping friends though I would prefer not to have to drag my parents in and bring up too much of the past as I feel I had a bit of an upsetting childhood with them at times.
Really I just want to completely bury my head in the sand until some sort of positive outcome but that hasn't gotten me anywhere in the past. Maybe that's why bringing someone else would help.
My wife has only known me for nearly 5 years but of course spends the most time around me and notices the most but is that kind of reference wasted as it doesn't justify the "lifelong condition" criteria?
I just want everything to be final and get on with sorting things out... patience is not my strength with these kinds of things.
my private assessment in July was £800, 1 month between referral and diagnosis appt. I declined to give details of parents/family and it was not an issue in me getting diagnosed
I was quoted £1500. A fairly local ADHD centre who also include autism.
You shouldn't change or want to change your brain ever ) (
It does help to see why you made the choices and decisions you've made though. I can now see it wasn't because I was a quitter or an exaggerator. It was because I simply couldn't continue. In my case ASD causes a lot of overload.
And because I am quite a serious case, that helps too in a funny way. I see myself in a different light. Less hard on myself.
I wanted it to be a reason why, an understanding of who I am,
Remove brain and substitute with a different one. Thank you.
I think anything can be used as an excuse, ranging from minor headaches to toothaches to La Tourette's. I am sure ASD fits in there somewhere.
So I wouldn't let that kind of comment stop you :-)
Deep breath!
The main reason I haven’t tried for an assessment isn’t the long wait or the cost although the money isn’t easily found.
I agree money changes things significantly. I had concerns about going outside he NHS but things were so bad I ended up doing so. My marriage and employment were both at risk.
The company I used is a social enterprise that invests any profit back into helping other autistic people. I also justified my decision because it will have speeded up assessment for the next person on the NHS list.
It feels very uncomfortable knowing that so many people can't pay for an autism assessment. I am actively campaigning for better access to autism assessment and aftercare.
Someone in this forum has had an NHS funded assessment after a 3 month wait which is encouraging. The wait seems much longer in most areas.
It seems if you have money you get a quicker route to an assessment and possible diagnosis. Unfortunately that kind of thing is out of the reach of some of us due to being on benefits due to disability. Suggesting things are not necessarily done on a needs based basis but on having the available cash basis.