Published on 12, July, 2020
Hi,
I think I may be on the autistic spectrum, but I am not sure and am struggling to get any help from my GP.
Last year I started to suffer from depression for no apparent reason. A lot of the negative thoughts were focussed on having not fit in anywhere through my life, and a lot of the trauma of childhood bullying resurfaced. When I discussed this and asked if I could be on the spectrum I was shot down as 'I was displaying far too high an awareness of my emotions to be on the spectrum'. Equally when in talking therapy I raised this and was told that I was more likely displaying signs of 'learned behaviour'.
On the other side I have a loving and caring partner who has teaching specialism for SEN. She has helped me understand the way I feel in certain situations, and provided some basic information for me. We completed the AQ tests, I answered as I would and she completed one for me anticipating what I would say. They both came out around 40 points.
I've always struggled to maintain friendships other than a few longterm close friends from certain points in life. While others can talk endlessly about nothing, I struggle for conversation after a few talking points, I find that people would rather avoid me than engage in conversation. If the conversation is lively I never know when to speak, or how to interject in to the conversation. By the time I have worked it out the conversation has moved on so I just stay quiet, or I interrupt which doesn't go down well. However, give me a subject i know about and I will talk endlessly to the point others are bored, but struggle to identify when that point has arrived.
With work I find it hard to work in what my managers call the 'grey', they have deemed me to be a black and white person who is incapable of inferring subtleties of a request. From my side I don't understand why people can't just say what they want? Worse I can get hung up on subjects, or ideas, often to the point that others are sick of hearing it. I quite often get told that I can't fix the business so I should stop. I don't mean too, I just can't but help notice when things are wrong.
At this point I am not sure what to do, or where to turn. Part of me thinks to just let it all slide. I've copped for 32 years without a diagnosis, what benefit will it bring? Then there are other times when I can't make sense of a situation at work, home, or a random altercation and everything comes back to the fore.
I feel a diagnosis would give me a bit of room to breath, I wouldn't constantly feel on the edge at work worrying if I have inadvertently offended someone without realising, or missed something in an email that was implied rather than explicitly detailed.
If I do not have ASD then fine, but my world would make a lot less sense than it has with my more recent understanding of how autism affects everyday life.
Sorry for the longish rambling post. I find it incredibly hard to write about myself.
J.
Get in touch with your state agency or Autism Parenting, or even your local collegerogm for Autism and find a counselor poional, who actually can diagnose you. Once iagnosed I was able to fit so many events in my life and I have never felt better.
When I read your initial post, I had to seriously think about whether I had written it under a different username and subsequently forgotten about it! So much of your story rings true for me - even down to be being fortunate enough to have a caring partner with a background in SEN!
I’m sorry to hear you’ve had to wait so long to get anywhere on the diagnosis front. I went through the Right to Choose route via Psychiatry UK and got my verbal diagnosis 2 weeks ago - still waiting for the formal letter though. I think my total time between sending them the forms and my assessment was about 4 months - I get the impression I’ve been very fortunate with that though…
Hello 75914 - I am Number.
Just an idea - based on what you have written and my impression of your current position - why not simply work on the basis that you are autistic for the meanwhile - I think it will help you stay sane and allow you to explore yourself on a formal hypothesis. Frankly, even if you do get a formal diagnosis, it will change VERY little about your current life to be honest - in any practical sense.
Anyway, rest assured that you are very welcome here and I hope you will find support and information to broaden your understanding of our weird and wonderful lives and minds......and the pitfalls of having these!
Kind regards - Number.
"The diagnosis has given me a sense of certainty and peace" This is all I want. I am trying to understand my triggers, stressors and situations that cause me the most issues. I struggle with executive function and work, often being so exhausted after a day in the office that all I can do is heat a ready meal and vegetate on the sofa. I need to find my inner peace so I can be what others assume I am.
12 months after initial contact with my GP, 10 months after the local NHS autism service accepted my referral, I find myself back here looking for reassurance to continue and this was exactly what I needed to read.
Today I put a request to go private through the right to choose. Here is hoping that this can speed things up. The provider is stating an 18 week turn around so much better than another 14 months on a waiting list.
AQ50, RAADS-R, CAT-Q reports all saved. A very patient partner who is going to accompany me to the assessment. Turns out I have loads of stims that I was mostly unaware of... Or rather unaware of how often I was not masking them...
I have just read your initial post and relate to your experience 100%. I'm 28 now and got my diagnosis 3 days ago after a 2 year wait for assessment! My suggestion to you is don't wait for your assessment. I have spent the 2 years of waiting reading, learning and looking at myself. Recognise what adaptations you need to make to survive in the world; and that you need the world (workplace etc) to make for you. Assessment, diagnosis, I've realized it is all just about understanding yourself more and figuring out who you are (personally something I find incredibly difficult). The diagnosis has given me a sense of certainty and peace, but by the time the wait was up, I almost felt like I didn't 'need' it for myself, more so for the people around me.
NAS75914 said:I've copped for 32 years
Yeah, we cope, until we don't.
40 on the AQ50 is high. And yeah, we can be aware of our emotions. I am, very. But I puzzle them out and dig deep for them, despite the fact that I am alexythemic and can't feel them as they rise, so I get a time delay compared to neurotypicals. There is so much ignorance out there among the professionals.
You deserve your truth. So, choices are go back to your GP, show him the AQ50 and insist. Or go private.
Let's say you are sounding like one of us. But sadly, we can't diagnose.
A small update, referral went in and I heard nothing. Just received a letter saying that my referral had been accepted and that I am now on a waiting list for assessment. The only downside is the wait list is 'up to' two years.For now, I will take the small win in that I there is possibly something more to this than feeling out of place all the time. Going to work with my partner to collate all evidence that I can, very fortunate that my partner is an SEN specialist so can help get this all in order before they finally offer me an assessment slot. Dunno if any of the commentators will see this but wanted to say thanks for your support and understanding.
NAS75914 said:I've copped for 32 years without a diagnosis, what benefit will it bring?
I had a diagnosis in my 60s. I wish I'd had it earlier but I am also very glad I now know. Certainty allows you to navigate this neurotypically-governed world with greater accuracy.
NAS75914 said:displaying far too high an awareness of my emotions to be on the spectrum
That doesn't sound like a comment which springs from an informed base, to me. I have a diagnosis - and it was absolutely clear cut; but I'm very aware of my emotions. We're all different; it doesn't work like a checklist, where if one item is a cross rather than a tick, you're obviously not autistic. A formal diagnosis involves many, many questions; an interview with someone who's known you for years (you won't be in the room for that); and other stuff. You can't possibly make a decision on the basis implied by this comment.
The NHS is quite happy with a private assessment so long as it is from a reputable assessor. There are some pretty dodgy ones out there.
I got mine from someone who is one of the most senior NHS Consultant Psychiatrists in our region, and who does some private assessments on the side. If I'd actually had an NHS assessment in a few years it might well have been with him, or someone working for him.
He was assisted by a Psychiatric Nurse with a bewildering array of qualifications.
My GP said she would refer me on the NHS but a diagnosis might take "years"; she wouldn't recommend a private assessor but offered to vet one that I'd chosen. Her vetting of this one was immediate and positive.
Prices vary stupidly - from a little over £600 to more than £2,500 - and the price you pay has almost nothing to do with quality; several of the expensive ones I checked out were offering assessors whose credentials didn't touch the sub £1k service I used.
Great to hear you’ve been referred, and that it’s brought you some peace of mind.
Thank you for the encouragement. I requested a diagnosis from my GP so now waiting to see if my referral will be processed or not. Fingers crossed.
Hi, thanks for your kind words. I but the bullet and put an application in with my GP. Week later I had a call to complete the forms for referral. Just taking the simple step and having the Dr take me seriously was a huge relief, one does wonder why go to the effort of the forms if there they didn't see something in my back story and some of the issues I have faced. What ever the outcome taking these first steps have been a huge help. Just the waiting game now to hear back from the referral, and I am surprisingly at peace with the whole process.To be honest, the scariest part was telling my line manager that I had spoken to my Dr about it, and that I feel that there may be something more to this than just struggling in the work place. Work have been really supportive and I am in a much better place than when I wrote my original post.
go get a diagnosis u wont regret it
Hello, J. If you're caught in a downpour, you have two choices: to run for cover, shouting and cursing at your misfortune; or to dance and laugh. Dancing and laughing releases good hormones, boosting your immune system. Running shouting, cursing your misfortune, releases bad hormones and weakens your immune system. Either way, you're going to get wet to some degree, but you're less likely to get a cold if you're happy with a boosted immune system.In essence, it's not only the choices we make, but how we make them that influences the outcome.I hope this helps your decision.
It certainly sounds like you are autistic. I scored 37 on the AQ50 test and was only 15 minutes in to my assessment when the consultant psychiatrist said that he was diagnosing me as on the spectrum. We spent the rest of the time discussing my comorbidities and I received three additional diagnoses.
I'm in my 40's and finally asked an Autism doctor if she thought I was on the spectrum and she answered immediately. I got an MD and a PHD to immediately tell me "YES". If you suspect you are, you probably are, your friendship issues sound all too familiar as well as the bs talk and the inability to discern communication like email and work interpersonal communication (again, all too familiar). Dude (or ma'am), you sound like me so I as NOT a doctor am giving you a 90% chance you're on the old SPECT. Someone mentioned here that it is hard to be taken seriously. I've had siblings not believe me even after afore-mentioned doctors said "H3LL YES". People don't get ASD/Asperger's and this is why we live in the Uncanny Valley. I am BRAND NEW on here (signed up tonight) but would love to have a one on one with you so feel free to DM me :)
Yes, get as much evidence as possible.
They will also ask for evidence of childhood behaviour etc because it is life long and there should be signs from an early age. They will usually want to hear from parents or family members. But don't worry too much about that. I didn't have access to that (diagnosed at 49) but I had so much adult based stuff, they didn't really need it.
If the GP is still unresponsive, you are within your rights to ask for a second opinion.
A diagnosis isn't always necessary, but there can be various benefits depending on what you're wanting to get out of it.
Good luck with it all.
Thank you, that is reassuring to hear. I think I will have to sit down with my partner and write down everything that makes me suspect. Evidence is what is needed, and then retry the GP.