Published on 12, July, 2020
I think I am autistic. I am having my assessment next Tuesday.
My problems started 6 months ago when I saw my GP as I have been struggling with quite severe anxiety issues all my life which have gradually got worse especially over the past two years. He refered me to IAPT for a 4 week CBT course. All was well for the first couple of sessions until autism was suspected as the cause. I had always suspected that I might have autism but at the time didn't relate it to my anxiety issues. The final sessions Tgot completely derailed as I tried to come to terms with this. The course duly finished and was told by the facilitator that as I was still struggling I would be put on the 6 month waiting list for an intensive 12 week course of CBT. A referral was also done to the autism dept for a diagnosis (3 month waiting list). I went away with my anxiety levels sky high knowing I had to try and struggle through on my own for 3 months. After a week of panic attacks at work I realised I couldn't so on struggling so decided to ring IAPT because surely they have a duty of care and an open door policy? How wrong I was, I was told they couldn't help and to go back to my GP. Next day I did go to the GP and he was shocked that IAPT wouldn't help and sent them an e mail asking them to contact me. I waited a few days but didn't hear anything by now I was starting to feel suicidal so phoned IAPT and spoke to the receptionist who said that someone would phone back ASAP. 3 days later they still hadn't phoned - I was phoning the Samaritans by now. I phoned IAPT again and did actually get to someone - bad news though - no they wouldnt help. I asked them when the 12 week course was likely to start and was told that i wasn't on the waiting list and my CBT person shouldn't have told me about it. Went back to the GP to ask that as IAPT were refusing to help with my anxiety issues who else is out there to help? He had no answers so I ended up being signed off work for 4 weeks. During that time Occupational Health got involved and I received 4 counciling sessions by phone(better than nothing) I also contacted PALS to try and get some help and they managed to get me enrolled on a 4 weeks anxiety course run by IAPT. After the first session we had to fill in various forms (GAD 7 etc) and a few days later I received a letter from IAPT saying that they were concerned and that I should contact my GP ASAP to get help. I went to the GP and he rang IAPT, they said they wernt prepared to help me until ive had the results of the autism diagnosis.
So Ive been hung out to dry by my GP & IAPT. Ive got no help from anyone. I am a postman and yesterday I had a slight accident in my van which has made things even worse.
I know CBT might not be effective but it helps me (had a course also 20 years ago which helps a lot)
I am so stressed out by the past 6 months and I have lost all hope of ever getting my severe anxiety reduced.
Me moment autism was mentioned all help was stopped. I feel like giving up on life
I am so sorry to hear how tough things are for you. Anxiety is such a difficult condition to manage when trying to carry on working. To have had to cope with that accident in the van must have been really difficult too. When I got to the point of being on the edge at work due to anxiety I went on a training course and knocked a large glass of water all over the table and spoiled the trainer's handouts. I felt like I was going to implode.
I felt so much better once I had begun my autism assessment. It's an incredible relief starting to make sense of so much that has been confusing about life. It's not an easy process by any means, but for me it has been the beginning of a new way of seeing things.
It's good that Occupational Health offered you some phone counselling. Can you go back to them and explain just how bad things are? There might be something more they can do. Are you in a Union by any chance? I had a session with my Unison rep yesterday and she was absolutely brilliant. It helped me so much to talk through some work-related stuff with someone who had the time and inclination to listen.
When I am not getting depressed about the lack of mental health support for autistic people then I am getting very angry. It seems to me to be a human rights issue that a diagnostic label we have, or are suspected of having, excludes us from accessing a service. I fought this battle as a mental health social worker back in the 1990s and it is so depressing to see the same barriers still exist today. When I have enough energy I am going to raise this with my MP.
In this community you are surrounded by people who understand what you are going through and just how awful it is. I really hope that you get the support you need soon, and that you feel able to carry on sharing your feelings with us in the meantime.
Thanks sunflower
what frustrates me is that I found CBT beneficial
it should be up to me not them if I think it might help me
eveeyone with autism is different, they shouldn’t be able to impose a blanket ban like this
I came across some research Autistica are doing on anxiety and autism - good to see it getting some attention as it has such a drastic effect on quality of life:
www.autistica.org.uk/.../anxiety-treatment-autistic-adults
Ah, I found that blog about research standards that I mentioned; I'll stick it up in its own topic - it deserves it's own thread rather than send this one any further off-topic.
Yes, I agree it's refreshing to find some rigorous research being done that autistic people have actually had a say about.
Something that concerns me about all the emphasis on 'cure' and 'prevention' research is that it implies there's something fundamentally undesirable about being autistic.
If I am autistic it's the only way of being I've ever known. I've struggled with being different sometimes but I've had a hell of an interesting life. Would not want to trade quirkiness for bland 'normal'!
It's nice to see that it's a properly randomised trial rather than just another load of internet surveys too. I was reading an article the other day (sadly, not bookmarked, d'oh!) about how in autism research, there's generally a less critical standard applied than in general psychology research - as if it's been accepted that autism research is allowed to be a bit sloppy, especially where big claims are being made for interventions (e.g. the dreaded ABA).
I just missed the boat on that one, I think, but did join Autistica's "Discover Network" a little while ago, as I like that they involve autistic people in deciding where their funding goes (the "Get Involved" link takes you to the signing up page). I've not had any e-mail requests yet to join a study, but I do like the idea of participating where the objectives are about real world support instead of theorising about the causes of a condition that it's too late for us to change.