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
That's a stunner!
The worst thing about depression and anxiety is that it can so easily make us feel guilty about stopping to smell the roses at moments when there's nothing immediate that we can do to change things. Allowing ourselves that is so important, as it really does help, no matter how much an anxious brain will try to convince us otherwise.
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.
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
Thanka for the support
it really helps to know that there are people out there who care
It's so demoralising when opening one door closes the others, I know, and it really isn't fair given that you had found a therapy that was working for you; I've had similar experiences myself - my last counsellor even said to me that she thought it was medically unethical that my last programme of counselling had to end when my allotted number of sessions had run out.
But as the others have said, one step at a time. Just concentrate on getting through to the assessment for the time being. Once you're there, you'll be talking to people who do understand the kind of experiences that you've been having, because almost everyone they see will have been there before. It might be a bit nerve-wracking at first, but just be as honest with them as you are being with us, and it will be fine. They'll also be the right people to talk to about how you might resolve the problems with accessing counselling; they probably won't be able to arrange it directly, but they should at least have a good idea of how local services are organised so that you can go back to your GP a bit better informed, so do make sure that you raise it with them towards the end of the assessment.
In the mean-time, we're always here for you - we might not be trained counsellors, but on the other hand, we do understand autism from the inside, and folks have shown again and again since I've been here how they'll rally around when one of us is in dire straits.
Best wishes.
thanks for that
i wish they had told me three months ago that they weren’t prepared to help me, would have saved me from waiting for return phone calls that never come and being treated like a hot potato. My anxiety levels have escalated through to roof during this time, all so Unnecessary
I was desperate to get my husband to see the sunset because it was so spectacular. He was a bit less awe-struck than me - I found it jaw-droppingly beautiful!
Wow
As I can't do anything practical to help you I am sending you a photo of the sunset I took earlier tonight. For me autism means seeing and feelings things really intensely. Although this can be very challenging it also brings moments of great joy.
I agree with you completely, it should be a matter of individual choice. It is outrageous that autistic people are discriminated against in this way. Perhaps if autism is made a protected characteristic, like gender, things will start to change.
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 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 for your reply
I recognise this problem all too well unfortunately, and I think many of us here have had similar experiences with mental health services. It’s only taken me 3.5yrs, misdiagnosis, mistreatment, multiple suicide attempts and constant pushing from me to finally have been recommended a referral to specialist (ASD adapted) services by a Consultant Psychologist. Problem is that means an Individual Funding Request, which we’re waiting to hear about right now, so who knows if I’ll ever get the help I need. In the meantime I’ve lost all I’ve ever enjoyed in my life, so I’m wondering what the point in trying to recover now is...
Please try to keep going until your assessment at least, and then hopefully you will be able to access the help you need from there, even if as in my case that means you will need an IFR. In the meantime, talk about how you are feeling with whoever you feel comfortable with, keep checking in with your GP (try a different one if needs be) and look at other options for the CBT, for example I believe the NHS have some online CBT courses now and there are self-help books with it (I have used ‘Exploring depression and beating the blues’ by Tony Attwood and Michelle Garnett previously). Also, try to do anything that makes you feel good, no matter how small e.g. listening to music, walking, eating certain foods, watching certain programmes, calming breathing techniques etc.
You can get through this, just remember what a tough cookie you are to fight through your anxiety every day: “Even if you go for it and it doesn’t work out, you still win. You had enough guts to head straight into something that frightened you. That type of bravery will take you places.”
We’re all here for you if you need us.
Do try and hang in there. I am still waiting (3 months) to try and get the assessment centre I have been referred to to pick up the phone so that I can book an assessment. I also have an IAPT call today and Ive hit another crunch point - you know, those times when fixing yourself on your own doesn't quite cut it!
Do keep involved with the forum. I have met some good people here and that has been invaluable in keeping me level and knowing that I can reach out if needed..
Ellie
I am afraid I am not going to be of much help. You are doing the right things by contacting your GP (continue with that and let them know how you are feeling), Samaritans, etc.
Perhaps try contacting one or more of these organisations:https://www.iesohealth.com/en-gb/patients (discreet and confidential one-to-one cognitive behavioural therapy is delivered using an interactive online service - you may be able to get a very quick referral)https://www.mhm.org.uk/Pages/Category/helpline (helpline and web chat)https://www.nhs.uk/conditions/suicide/
I know what you mean about feeling like giving up on life because I feel the same. I am still searching for an answer.