Published on 12, July, 2020
... she basically said a lot of the symptoms I mentioned are similar to what others experience and I got the sense that she didn't believe that I actually have autism. I tried my best to express everything I go through, though I know I missed a lot out due anxiety and, well, autism - I find it very hard to explain things and yet in order to get help that's what I have to do and the whole thing is very stressful and frustrating. I've also only just realised recently that this is what I have and haven't got to a point where I understand it all and can articulate it yet.
The whole thing made me feel under the spotlight and I felt like I was desperately trying to prove that This is what I experience and This is where I need to be referred to please. It's like I've already questioned myself enough as to whether I actually have this or whether I'm just being melodramatic without feeling more under scrutiny from a doctor too. But then maybe I'm overreacting and it's just that she simply didn't confirm that I'm autistic like I'd wanted, rather than her thinking 'there's no way you're autistic'.
Idk if this makes that much sense at this point. Does anyone else feel like other ppl don't believe/understand them, even professionals? It's basically why I haven't told my family yet because I expect they'll be somehow dismissive.
She also said that the waiting list for an assessment is over a year, which is fine and all, what I expected, but the thing is I need to be applying for some benefits soon because I have no income. Do I have to wait until I'm definitely in some kind of service before I can apply for benefits? Presumably I will need to prove that I'm sick, but if I'm not currently getting any help, how can I do that? I guess I could have a panic attack in front of whoever it is that decides whether you get benefits or not.
I have an assessment in 6 months for some kind of general therapy so that's a little sooner at least.
Any advice/thoughts would be greatly appreciated because I'm feeling a little on my own with this right now.
Sorry to barge into this convo, I just wanted to share some things that help me when I'm struggling. Idk if they'll help you but it's worth a try.
https://www.youtube.com/watch?v=L4os0IxmGv8 videos and books by Eckhart Tolle have helped me a lot over the last few years.
https://www.youtube.com/watch?v=yQ-qsFKdRRs same with videos by Ram Dass. I've been trying out this meditation recently and it seems to send me into a calmer, more focused place.
https://www.youtube.com/watch?v=nzCaZQqAs9I this one is maybe more practical by Wim Hof. I've been doing this breathing exercise everyday for the last few months and it really helps me when I'm feeling overwhelmed by things; it calms me down. It's also helped me get through some emotional pain and trauma. I usually end up doing 10 deep breaths twice, then 15 twice (sometimes 20 on the last one) instead of the full 30 or so that he says because it's harder to motivate myself to do it the long way.
Wow that's pretty shitty that they never referred you when they said they would. At least you've met this person now though who will actually do it. I hope it doesn't take too much longer for you to see someone.
To be fair it wasn't funny so maybe 'joke' was the wrong word. 'Tongue in cheek' probably fits better.
I struggle with that in real life but I'm usually pretty good with writing.
Now that I think about it though there have been times when I've had to read things over and over before getting a sense of whether it was serious or not. And sometimes my brain just doesn't work at all. It's weird because sometimes I feel very attuned to things that I'm reading, then a few hours later it's the opposite, like my mind has vanished and I might as well be looking at hieroglyphics.
This turned into a ramble, sorry. I'm still trying to figure things out.
I'm in a similar situation as I've had two different doctors in two different surgeries say that they would refer me but it never happened. However, since losing my job and receiving fit notes from my new doctor I went to the job centre and got put on a three week course that supports people with autism and suspected autism and the guy who runs it said he would be very surprised if I don't have it with all of the traits that I show so he is going to refer me directly to speed up the process as I've been waiting for about a year to actually get referred through doctors...
Ah I struggle with jokes and seriousness! Especially online it's a mine field. I actually have started telling someone I speak to that I dont know if hes joking or not. Hes working on that I think.
I've seen professionals for my son and also my gp think I'm on the spectrum. I've started thinking is that enough? The waits so long do I need formal diagnosis and the stress of going through it. My anxiety is at full time high. I had planned to relax after the school run today and stay in just reading. However someone just whacked my car on purpose! So I seem to attract trouble without even trying im so stressed and in a I hate people spiral
That was meant to be a joke. I obv can't fake panic attacks. I had one last week at a support group for anxiety etc (irony!). I've had them throughout my adult life w/o knowing that that's what they were - I thought for it to be a panic attack you had to collapse or make a scene somehow, whereas I've always panicked quietly with nobody noticing most of the time.
And a 5 year wait is ridiculous. Maybe they're trying to win some kind of an award for inadequacy.
I understand where you're coming from, having just been through the process - I "only" waited 18 months!
I feel that this shouldn't be happening to you - can you write to your MP? NAS? Surely someone should be able to change things for you.
Suffolk. Originally told no services for adults. Then told 5 years or more! I've been told by a couple of professionals I'm more than likely on the spectrum. I should just take it as I am I guess but my brain is pretty much 'I need to know for sure' on most things. I'm feeling so frustrated and cheated. Been through life frustrated and blind not knowing why lifes so hard. No family or friends for support I feel alone. I've started talking to a handful of people but not sure I can trust them or if I can call them friends. Life is hard
5 years / never for adults is beyond long - what part of the country is that?
The NHS advice is quite vague. The tests would be a slightly better indication. I've scored highly on the tests, professionals have mentioned I may be on the spectrum too but the wait is 5 years plus!
Wow a year is nothing....over 5 years here! I was told their not putting any more adults through for now :( I myself cant fake stuff like panic attacks, I think it's why I dont get listened to if I'm genuinely Ill. I dont show the dramatic emotion that others do
Thanks for replying. I should probably agree about not judging it too soon myself, but all the evidence so far is stacked in autism's favour
Thank you very much. This is really helpful. There's relief knowing I can apply anyway
I haven't but I've read stuff on the nhs website and here, plus ppl's experiences here, and everything I've read so far connects, as if my exact life is being described. Idk if I'll do those tests but I will be doing more learning about it
It can feel like no-one believes you for sure. Most of the symptoms of autism can also be symptoms of something else or nothing at all; it's having all of them together that makes the difference (or at least a symptom from each of a specific set of categories). This can lead to people thinking and saying "hey, I get that, and I'm not autistic, so you can't be either).
It's also a long wait.
Questioning yourself is common, and the not-knowing-for-sure can be very distressing.
Have you done all of the tests that you can get your hands on? Aspie Quiz, AQ50, EQ50 etc? These can provide at least some circumstantial reassurance whilst you wait, or point you elsewhere...........
Unfortunately some GPs don't have much knowledge/awareness about autism and can be dismissive or perhaps just try to normalise your experiences because they think you'll feel better. If she has agreed to refer you, though, that is the main thing and my experience has been that the autism team (when you eventually get to see them) are very understanding, helpful and thorough.
In the meantime i would suggest that you make a benefits claim based on your difficulties and how you function in the world because I think the DWP focus on functioning rather than diagnosis (although if diagnosed this would provide corroborative evidence at a later date). I would also recommend using the Benefits and Work website info to help you with your claim as this will help you to ensure you capture all the relevant information and increase the chances of it going through successfully. I tend to go through these things with a fine toothed comb, check my wording, that I've included all relevant attachments and keep a copy for future reference.
While your assessment is pending you could maybe state that you have a referral to the Autism Team plus, if you suspect your current GP might downplay your difficulties, see another one and make sure they are up to date. The DWP may well contact your GP surgery and it's as well for them to have seen you recently and be aware of all your issues. I have been known to take a list with me to make sure, as far as I can, that everything's included. It's also my practice to respond to any NHS correspondance which i think omits or downplays anything, asking that it be amended in case of future queries by third parties (meaning the DWP or pensions agencies). Guess i'm just not the trusting type!
Overall my view is that it's better to get a claim started asap as you don't know what delays or queries there might be and all the time you'll be moving up the assessment waiting list.
Before a diagnosis I believe a person should use caution about believing they have autism. What I mean is, don’t get too attached to the idea because it could be you go for an assessment and they tell you that you don’t have autism.
On the other hand I wouldn’t take the GP’s somewhat dismissive attitude too much either as GP’s and a lot of doctors seem to show a lot of ignorance towards autism.
A lot of my symptoms were put down to ‘just depression’ and emotional instability. So while people acknowledged I socialised ‘oddly’ People just kept telling me “if you could just gain more confidence” etc. And when the subject of autism came up people agreed I probably was, but always with the, “But everyone goes through these things” added on.
ANd I always struggled to explain how much was I going through.
I got my autism assessment and was diagnosed with moderate autism.