Getting a diagnosis.

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So I think I've convinced myself that I'm on the spectrum. Having read a bit on the coping mechanisms, i had a 'this is me' moment.
Im building up to see my GP, but Im actually worried that It will be dismissed. I get on okay with things, i just think going through the process and being able to say. Hey, I find all this hard and there is a reason, might bring some legitimacy my life. I guess the real worry is that Im looking for an excuse and actually I am just a socially inept etc.

Is seeing a GP jumping the gun? Are there other avenues?

Here in the UK, going to see your GP is the normal method. Hint. Either write down on paper or have it on your mind why you think that you are on the spectrum. I tend to get mindblank and clam up when I see doctors, and it happened when I wanted to ask if I had autism. (I expected the GP to know there and then and I very quickly found out through something the GP said, that the GP I saw (Only seen that GP once as the other doctor is my doctor) did not seem to know a huge amount about autism as she didn't know that I was describing a shutdown. Having said that, if she had not taken me seriously, she would not have put me on the list to be assessed, so I am really greatful to her for this. She said to me she would refer me but she did not have much to go on, so she doubted that they would accept me on the list. Fortunately they had a meeting and did put me on the list. Phew!
So anyway. Find out about autism from this site and other places, and write down any traits or reasons why you think you may be on the spectrum. Be honest. Also, any questions ask. It is partly what this site is for.

Not sure where in the world you are, and I think it might vary a lot based on that. In some places, having a doctor's referral is mandatory. In others, you might be able to get the cost of an assessment covered if you have a GP's referral. In some places, it's completely unnecessary. I'm in Canada, and here, a referral will get the cost of an assessment covered for a child, but adults will always have to pay for an assessment unless they have insurance that will pay for it.

Also, I think it's very much hit and miss in terms of how helpful a GP will be depending on who your doctor is.

I'm in Canada, and for me, my GP was very, very helpful in getting my diagnosis at age 36. I made an appointment with him and described to him what my concerns were, at the end of which he said that I was showing some signs of possibly having ASD while I was describing it, and he gave me a phone number I could call to find a psychologist to talk to about it.

That said, I've also heard horror stories about less informed GPs who say things like "Adults can't have ASD", which would seem to me to be a pretty good indication of a GP who doesn't know much about ASD.

So, I'd say talking to your GP is probably a good first step, but if you get a reaction that isn't in line with what you're looking for, don't be afraid to look into it further by yourself.

All good advice so far. I would recommend that you take a copy of the DSM5 or ICD11 diagnostic criteria with you, and have your notes tailored to match those descriptors. The doctor won't want to admit "Gee I have no idea what adult autism is like", but if you have a printout conveniently attached to your personal anecdotes, they can look it over. It will also make you seem more credible and prepared.

I didn't bother with a GP referral and went straight for private testing. My ASD doctor sent my GP a copy of my assessment report and we discussed it at my next regular appointment.

does a diagnosis matter, to you? it hasn't for me, so i remain undiagnosed. i have no reason to believe that a diagnosis will get me anything of value to me, so i have no inclination to try to get one. i'll just continue to be who i am until i am no more.

if you want to know, or feel a need to know, that's OK; go for it. i just wanted to let you know that not everyone wants one. you decide what's right for you. i wish i could help you more.

The neuropsychologist who did the initial consultation before the testing didn't seem to give a BEEP about what symptoms I say I have in relation to the DSM5. I was super prepared with a print out of the DSM5 symptoms and examples of how I match all of them, an AQ test I had taken online, and a general practitioner recommendation. She said the tests and symptom list I created are nice, but since they aren't part of the official testing that they are pretty much useless to her. I felt like my experiences were invalidated. The paperwork she sent to my family didn't even ask about my stims or breakdowns. It was like a general psych quiz. Just know that not all testers will care about your experiences leading up to the testing. I hope it's not that way for you. Best of luck!

I hasn't for many years. Have often thought there was something going on. I got a new job three years ago and I realised to progress I had to change my behaviour. Its tough, i found it to be a real struggle. I had to find new mechanisms to just get through day to day. Then at the start of this year I asked myself to improve my friendships. Its friggin difficult and I keep having knock backs. This is with people I've known for years and assumed friendship.
I just want to say to them that im trying but its hard and this is why... like I said. Worried im looking for an excuse.

...will read the other replies now.

I'm in the UK.
Being prepared regardless of reception seems like a good idea. Even if it just means I have a clear plan in my head. I too would probably just clam up.

Doctors aren't so bad. I can almost switch off to them... Waiters though, i basically just point at a menu. Hate them, something about them just locks me down. One step away from having my wife order for me.

Is there a UK criteria listed that I can review?
I will probably lurk around here for longer before i book anything. Already a few things that make feel more at ease.

Thanks for the replies.

If it comes back with a diagnosis. It won't do any harm. I can choose how and when to release that info.

If it doesn't. Then i guess i start asking deeper questions. At least i could move on

Start listing some reasons why you maybe on the spectrum and try to get the appointment early. As I kept clamming up it took me two years of trying before I was able and I actually took my Mum in with me on the day to see the doctor as if I clammed up she could speak, and as things turned out, I did clam up and one point and my Mum took over.
The reason why I say to get in early as many parts of the country have long waiting lists,,so the sooner you can get on the waiting list, the sooner you will be assessed.

Just be careful here, because the definition of ASD in these manuals (at least for me) tended to actually suggest that I might not have it, because I tended to interpret the criteria quite literal. When I asked the psychologist who diagnosed me about this, he said that yes, he was sure I met the criteria, and that in some areas, the symptoms and signs can be quite subtle or present themselves in different ways from the examples given.

Even if you read the criteria and feel like you don't meet enough of the criteria, I wouldn't rule it out anyways!

Sooo, I am waiting until this Corona is passing. I can wait a bit longer before seeing a GP.
I did however put together some rambling text...


Have thought I could be on the lower end of the spectrum for many years. Social interactions is a real grind. Having taken indicator tests online before, I will normally just about hit the lower value. E.g. if you need 30 out of 100. I typically get about 31.

Generally just feel on the outside of everything – when I first saw this website, I totally connected with the name, I read a few posts on disliking eye contact and it made for a good read.

My main complaint is that when people are about, I feel like I’m on a mental lock down. I can’t seem to let go and be my normal self. I’m only ever fully relaxed around my wife – she is a massive social enabler. (Probably a high performing anxiety related issue, but that’s another story).

I find that I’m always trying to relax and the moment I am, I say something odd / inappropriate – luckily my colleague is lovely and puts up with my rubbish. Unfortunately, my boss is an ass, which can be an issue.

…I find making apologies an issue. I owe a few, but I struggle to make them in person. Once they’ve been left, it makes it even harder. Will probably just leave it and hope I forget about them at some point.

Even with my friends, I tend to just do activities where interaction isn’t really required – computer games / films. Even then I don’t tend to give my opinions on them, I find making a conversation a real bind. This year I’ve tried to improve that, I think it has worked a little, but it’s been hard and off putting at points.

One thing I get is that people will say, “you make me laugh” so I assume it was more my manner as opposed to being actually funny. I’ve tried to embrace that and just carry on as I am.

Recently read the compensation list and fair bit of this struck me as my behaviour, certainly about 50% of the things mentioned struck a chord with me. I don’t tend to do the deep masking by acting out a role etc, but in life I feel like I’ve carved out a place where I can be a little odd without people raising an eyebrow. Plus my ability to lie is appalling.

Don’t really like being touched by people. People I don’t know is the worst, I’ve learnt to expect family to hug each other at times, but I would still rather avoid it. A new colleague of mine hugged me unexpectedly in a work photo, and I almost shoved him. Knowing there was a photo being taken I just had to grin and bear it. It was before Christmas, I still hold it against him.

Hate eye contact with people. I feel obliged to do so but if I’m looking at someone, I’m not listening to them because the eye contact breaks my concentration. Just turns my insides, makes me feel so uncomfortable.

Really disorganised. Sometimes it makes it look like I don’t care. I do care and I do try.
Things just don’t seem to pan out well. This is at home and at work. Additionally, when I’m talking to people its hard to be clear. I seem to miss words or generally get things confused. A recent comment was an old colleague stating “they forgot I spoke in riddles”.

Really clumsy. Drives me nuts the amount of times I bump into doors, desks etc. Or drop stuff.

If someone is crying, other than my kids, I tend to lock down. A pat on the back is all they would get…lol. This has been hard with my wife if she is upset.

I don’t really have OCDs. I sometimes cant let things go - dig a lot holes that way.
I’m not aware of having any ticks (not sure if that's the right phrase), like hand flapping etc.

Pretty sure I’m tone deaf or at least as bad as you can be without being clinically tone deaf. Don’t dance - don’t get any enjoyment from it. Just feels horrible.

My father (we're not close) shows signed of deep masking. Now I know the phrase, it actually makes a lot of sense about some things that have happened in the past...

One of my children gets a lot of sensory issues. noise, bright light, clothes feeling wrong, personal space issues etc.
It breaks my heart that she might grow up and feel anything like this.

Think that's about it - I'll probably add more and refine it for future use.. Thoughts are welcome
Thanks.

One important question is if you had problems as a child. Ideally they will want to get a parents recollection but I'm sure you'd know if you had problems.

The "Restricted, repetitive patterns of behavior, interests, or activities" from the DSM-5 only requires 2 out of 4 characteristics so "hand flapping" level of stimming is not required. Many of these weren't obvious to me when I first read them but now realize I meet all 4 at least mildly.

I would think sufficiently bad eye contact would be enough to get you considered for evaluation. You here stories on here about people with good eye contact finding it difficult to get evaluated.

Hi Swavey
I recently was diagnosed at 43 in the UK. I went to the GP first-to one who I felt was the kind who listens well. He didn’t actually know all that much about the pathway for referring adults, so it was good that I went prepared. The AQ10 (easy to find online) is NICE’s recommended screener for ASD in adults, it would probably be worth taking a filled out copy of this with you. I also took the standard AQ and another longer questionnaire that I’ve forgotten the name of at present. I also took along a list of the things I felt may indicate ASD in me throughout my life span, the reasons I wanted to be assessed and the difficulties I had/have that I was attributing to potentially having ASD. I think it’s worth thinking about how your quality of life is affected by ASD as the GP needs to justify your need for a referral beyond just personal development or curiosity.
After that be prepared for a long wait. It took about 18 months from visiting the GP to receiving my diagnosis and I am still waiting for further help after 22 months (for sensory differences with Occupational therapist and a group for newly diagnosed adults run by the local Adult Aspergers service.)
Hope this information is of some help to you!
Welcome to Wrong Planet by the way!

Welcome! Yes, I had a list too, which I took to my assessment (part of my 50 pages of evidence - which I had really cut back!! !)

I mask (and evade) very well (late 40s), as does my ASD-like daughter (age . I came upon ASD b/c my daughter is the more stereotypical ASD (inexpressive, "cold") --- I surprised myself by scoring high on the AQ, and decided to get diagnosed first. When I read more about ASD, I was like "oh!" And then -similarly to you- my recent workplace struggles made "sense" as well as lifelong struggles. And for my mom, who is the ASD-like parent.

An "excuse" is when someone gives up, this is about understanding and new approaches - and more grace for ourselves. I don't know about you, but I am not someone who gives up! I may be upset and stressed and not sure how to go about a thing, but I do not give up. I take too much responsibility for things, so it would be good to have some "excuses"!

Our GP didn't think either my daughter or I were ASD. I explained that we are outwardly "well behaved" and what the internal experience really is like. Initially my therapist didn't think so either, but then I started to relax and be myself - and now she is on board. I also have unmasked with my parents - trying to find a better balance of behaving in a way that's comfortable for them, but for the first time behaving in a way that's comfortable for me!

In the USA, I chose a private evaluator with experience with adult (female) ASD. In retrospect it must have been fairly obvious to him (my intellectualization, bursts of talk and then muteness). I didn't make the clinical cutoff on the ADOS-2, but that's so for near 30% of adult ASD women. I had an evaluator who understood that.

I see ASD as extremes. I am hypersensitive and my ASD-like BFF is hyposensitive. I write this b/c my ASD-daughter is also hyposensitive and my son who is hypersensitive like me, seems to NT like his dad and my father. So sensory issues may be highly correlated with ASD, but not strictly indicative of it.

I think my ASD-like daughter is going to fare better than me (I hope so!) because I am raising her with awareness rather than the shame I was raised with. I can see how it's improved each generation for my family: my grandmother who was shunned, my mother who hid, me who am "coming out" and my daughter who I hope will live more authentically than any of us did.