How Many Years Of Waiting Before You Were Assessed?

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How many years of waiting did it take before your origional referral for an autism assessment and when you were assessed?

I only had to wait 6 months.

Years?
I got the referral straight away.
It only took a couple of weeks to see the psychologist.
I think my GP even arranged the appoinment.

From the time my Psychiatrist thought I might be autistic until I was actually diagnosed was just a little over a month.

I was wondering because I am relocating so I will be placed on a new list, so for me it could be double the wait.

Last edited by Mountain Goat on 24 Apr 2023, 4:36 pm, edited 2 times in total.

About 4 months.

Can you find out where you are on the list that you are currently on? Will they tell you? 4 years is about the longest time spent on the list that I have heard of from others in the UK. Maybe you are near the top by now?

Has been 12 years for some people in the UK in the past. Depends where one lives. I was woncering how many have been waiting a long time on this site or if I am an isolated case?

It was only a few weeks for me, back in 2009, and that was the NHS. But I'd heard that it might take a lot longer than that, so as I was rather desperate for a quick DX, I arranged to get it done privately, thinking I might cancel the private appointment if the NHS one came up. As it turned out, the NHS sent me an appointment a few days after I'd got it done privately, so I needn't have panicked and paid out good money.

Anyway, the NHS has probably got worse since 2009, so I wouldn't expect it to be that quick if I had to do it again now.

If I recall correctly I was told I'd be on the waiting list for at least 18 months but it ended up taking 3 years. I was diagnosed in late 2019.

I was told two years and I know fully well that in reality it had been six as my brothers ex GF's child had to wait. (She was highly intelligent but held back as she could not read or write and schools were not allowed to help her until she was assessed. But she made very quick progress when given help as by the time she reached the next school at age 11, she could write words up to six letters long).

20 years, but the fault on that is entirely mine. After a bad experience with being diagnosed with ADHD in middle school, my reaction was an utter denial of all things neurodivergent. I didn't want to believe I was different from others so I just didn't accept it and I resisted people's suggestions I see someone about my struggles. I spent a really long time in that mindset, though thankfully I've moved past it now.

In my 30s I faced a couple of really stressful job transitions that left me with no other option than to seek help. From there I just called and made an appointment for an assessment. I didn't need a referral from my therapist or another psychologist or anything, they just started the process. After all I had heard online about the high cost of assessments, I was scared to see the bill. Thankfully, it was one of the few things my not-so-great insurance was happy to cover without protest. I don't think I even spent $200 out of pocket on the whole thing.

I was diagnosed finally at age 68 after searching without referrals. I am in the USA and my doctor and insurance were not able to refer me to anybody who could/would do an evaluation/assessment/diagnosis. I spent hours almost every day making phone calls, sending emails, searching the internet, etc. I did finally get an appointment at a clinic with an autism specialist who worked with older adults.

The waiting period before the appointment was 3 years! During the wait time I kept searching because the specialist was three states away from where I live.

After a failed attempt with a neuro psychologist who finally told me he had never diagnosed a single person with autism (after his staff told me he had lots of experience and had diagnosed many older autistic women, pushing me to make an appointment without talking to him) I found a specialist psychologist in my home state. He had over 40 years of experience with autistic folks including adults and he did tell me himself that he had diagnosed older women, among others.

After 3 years of searching almost daily, I still had to drive 4 hours one way 3x and stay in a motel each night, plus had to pay cash (fortunately we found a way to do that) for 2/3 of the diagnosis/visit fees... I got diagnosed as autistic the day before my 68th birthday.
What a relief.
This should not be a common experience, and it is much more common, I think , for people to give up the search for diagnosis and remain self identified.

That's so crazy! I'm sorry you went through so much hell! ^

I don't understand what the big deal is for them to diagnose a woman instead of a man, or adults instead of adolescents. That's always confused me.

It's probably the same basic reason that it used to be so hard to get the OCD/ADHD dual diagnosis. Logically, that combination shouldn't exist because the symptoms are nearly entirely opposite of each other, and the symptoms often times look identical without further examination.

Girls and women weren't being identified and diagnosed as often, so the criteria were being interpreted more based on what you'd expect out of autistic males, even though there isn't any good reason to believe that it would translate so cleanly over to female patients.

This is also probably part of why there seem to be so many more female autistic youtubers talking about what it's like to not be diagnosed until very late than male youtubers covering the same topic.

Took me a couple weeks, but then it was paid for by private insurance. For public health diagnosis even a child would wait for more than a year.