How Long Was It Before You Were Diagnosed?

[Captain Caveman]

1. How long did it take you from when you first discovered you could be on the spectrum to the point you asked to be assessed? (For me, two years).
2. How long did you then wait from the date you were accepted for assessment to the time you were assessed and diagnosed? (For me four and a half years).

(I realize many of you may not have been assessed).

 

[Gerontius]

It first came up when I was 18. No paper diagnosis but the psych said it was presenting as high functioning autism/Asperger's and that if I worked on it I'd be doing a lot better.

And now I am. Doc was right, if you have tools for improvement it'll probably help some. I'm pretty grateful.

 

[Misty Avich]

I was practically diagnosed after coming out of the womb.
Well, 8 years old to be precise, but compared to like 99% of autistics here I might as well have been diagnosed from the cradle.

Sigh.

 

[jsilver256]

Came up about three months ago by my therapist. I'm in my 40s. I went the private route, so, one month and one month to your questions. I worried about the first assessor being a diagnosis mill, so I got a second opinion and yep still autistic.

 

[Misty Avich]

How did all you people manage to go through childhood without anybody noticing any weird behaviour and getting social services involved that forced your parents to get you assessed for something? Being diagnosed in childhood makes me feel like I'm severe or low-functioning, when I never have been severe or low-functioning.

 

[Misty Avich]

I didn't. I had severe behavioral issues and was in special ed, and required a 1:1 assistant up to college. It was just attributed to being deaf.

Oh okay. I had behavioural issues too and exhibited more symptoms of ADHD but wasn't diagnosed with ADHD until I was 31. Instead I got lumbered with an embarrassing Asperger's diagnosis (yes it was embarrassing back then to have a label like that that nobody else I knew had but everybody was told about).

And I DID have hearing problems, as I suffered with glue ear and a lot of ear infections.

 

[jsilver256]

Oh okay. I had behavioural issues too and exhibited more symptoms of ADHD but wasn't diagnosed with ADHD until I was 31. Instead I got lumbered with an embarrassing Asperger's diagnosis (yes it was embarrassing back then to have a label like that that nobody else I knew had but everybody was told about).

And I DID have hearing problems, as I suffered with glue ear and a lot of ear infections.

If I'm reading your post correctly, you're saying your life would be better if XYZ hadn't happened, because you see other people not experiencing XYZ (e.g., early Asperger's diagnosis) and then assume that they didn't experience the consequences of XYZ (e.g., social embarrassment).

If you hadn't had the diagnosis, maybe you'd have a similar experience as me, which was when my already-limited social circle started shrinking to zero around middle school with others calling me "weird."

The Hedonic Treadmill might be helpful here.

 

[Misty Avich]

If you hadn't had the diagnosis, maybe you'd have a similar experience as me, which was when my already-limited social circle started shrinking to zero around middle school with others calling me "weird."

I did experience that.

 

[Neonatal RRT]

1. How long did it take you from when you first discovered you could be on the spectrum to the point you asked to be assessed? (For me, two years).
2. How long did you then wait from the date you were accepted for assessment to the time you were assessed and diagnosed? (For me four and a half years).

(I realize many of you may not have been assessed).

1. 1 month
2. 1 month

 

[jsilver256]

I did experience that.

I'm sorry to hear that. Have you considered your school social rejection was independent of receiving a diagnosis?

 

[DaisyRose]

One year. I was doing my own research and learning more about autism before I reached out to get a diagnosis. I reflected on my past and seen all the symptoms. I’ve been like this since day one.

A couple months. It took a while because places were booked and the closest appointments were three months out. After my diagnosis, I was not surprised and happy for solving my mystery. It made me feel better and happier.

 

[Outdated]

50 years.

No one knew anything about autism when I was a kid but from age 5 other kids made it very obvious that I was different to them and not welcome near them.

My grandfather's advice was to "play with the cards I'd been dealt" and that's what I did. When I started working, ie, away from my tormentors of the past 11 years, I became very successful in work and in social circles but I was still very obviously different from most people.

Although nothing like any autistic person I've ever known the movie Rain Man did put that magic word in to the world wide consciousness. I didn't know what it really meant but I wondered about it from time to time. I didn't fully realise that I was truly autistic until I was in my 30s, but mentioning this idea to anyone was met with scorn and ridicule.

When I was in my 40s I became involved in a 5 year study of autism in adults and that's when I got all the revelations about autism that surprise so many of us.

When I was 54, in 2019, I applied for a diagnosis. It took 11 months waiting for me to get an appointment, and I was diagnosed in late 2020.

ASD2.

 

[mikes1992u]

I first met another kid officially diagnosed with autism when I was 15, my first thought was "that's how I would be if I wasn't trying to fit it". He was my stepbrothers friend but I got a bit a bit obsessed with him, we went to "do it for real" summer camp and I spent most of the time watching him. Meeting him though, everything in my life seemed to fall into place and make sense.

I did allot of research from then on and I went to get a diagnosis when I was 20 but I couldn't deal with the stress so I never went to the appointment. I'm 31 now and started the diagnostic process around December 2023 and I'm awaiting my appointment with the specialist. I went a bit overboard and analysed my entire life and ended up having a complete breakdown but after holding it in all these years I think I needed it.

I've heard it can take upto a year to get a diagnosis. I just need to stop panicking.

 

[Angular Chap]

12 years from discovering I might be on the spectrum until I asked to be assessed.

I first discovered the term Asperger's Syndrome in 2011 when I was looking into what was "wrong" with me. In 2021 I realised I was going to have to come out at some point. It wasn't until last year I finally made an appointment with a GP to talk about it. I've been referred for a diagnosis, but I'm still on a waiting list.

 

[Fino]

I was assessed without having known what it was and still didn't really know what it was until over a decade later.

 

[Misty Avich]

I'm sorry to hear that. Have you considered your school social rejection was independent of receiving a diagnosis?

No. The second I was diagnosed, my mum told literally everyone; the whole family, friends of family, and soon my whole class knew. I really didn't like having a label anyway, without everyone and their dog knowing about it. So whoever blabbed it out to my whole class might as well have said I have the bubonic plague, because kids started treating me differently. Also I treated myself differently too. I felt quite normal before the diagnosis, then afterwards I began to question my entire existence and thinking that everything people did was because I have Asperger's, and I didn't feel normal any more.
I remember one time when I was 9 I was playing with my dolls with my 5-year-old cousin, we were pretending the dolls were us and our mums, and I made 'my mum doll' yell at 'me doll' for being cheeky, and my cousin suddenly made her doll yell to my doll, "yeah, you have Asperger's syndrome!" It made me freeze, as it just felt weird hearing that from a 5-year-old (who is 100% neurotypical). I didn't react though, I just carried on playing with the dolls.

Like when my mum and dad split up and my mum kept asking my dad for child maintenance support for me, I used to think the child maintenance support was something to do with me having a "disability". Or one time when the teacher handed out sweets to the class, I was the only one who got a red lollypop, and I thought she had given me a red lollypop because I had Asperger's and had to be treated differently or something.

Oh - and I'm not even going to go into the meningitis vaccination saga I faced in 1999. I never felt so singled out in all my life.

 

[The Pandector]

How did all you people manage to go through childhood without anybody noticing any weird behaviour and getting social services involved that forced your parents to get you assessed for something? Being diagnosed in childhood makes me feel like I'm severe or low-functioning, when I never have been severe or low-functioning.

In the 50’s and 60’s, things were different. First and foremost, you didn’t go around hoping to be diagnosed with some ‘mental disorder’, because it was considered a shame on your entire family. Second, mental health wasn’t on the menu at your insurance company, so even asking questions about such things cost serious expendable income. Third, even when I was an adult, a person with autism was sitting in the middle of the floor with a helmet on; if you were smart but stupid, you were crazy. And, knowing what happens to crazy people, you just shut the he!! up and hope nobody says anything.

Social services? Unless your parents died or they beat you until the neighbors couldn’t sleep because of your screaming, the authorities stayed out of family life. A public school teacher involving themselves in the private life of a pupil better have their ducks in a row.

Back then, they knew about breeding animals. An undesirable trait in one parent or child was a reflection on family genetics. If at all possible, you kept such compromising information out of the public eye so the other children in the family could still make good matches.

Things were different back then.

 

[Misty Avich]

I'm talking more about people my age or younger who grew up in the 1990s and 2000s.

 

[BewilderedPerson]

The second I can’t answer, but I know I found out in high school, didn’t even know what autism was before then.

 

[jsilver256]

I remember one time when I was 9 I was playing with my dolls with my 5-year-old cousin, we were pretending the dolls were us and our mums, and I made 'my mum doll' yell at 'me doll' for being cheeky, and my cousin suddenly made her doll yell to my doll, "yeah, you have Asperger's syndrome!" It made me freeze, as it just felt weird hearing that from a 5-year-old (who is 100% neurotypical). I didn't react though, I just carried on playing with the dolls.

I do a bunch of side coding projects.

My good friend usually teases something along the lines of "oh, you nerded out again" or "you are such a geek."

Last week (this after I told him I was autistic), he teased "autism strikes again!"

Just a thought.