How Long Was It Before You Were Diagnosed?

[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.

 

[Ghostinthemachine]

My journey started in lockdown with a gp referral to services then several assessments and finally a set of clinical interviews in total 4 years off and on.between my final clinical interview and receiving diagnosis 6 weeks but tbh I already guessed before I got to the interviews but I did need it confirming as I am no expert and given that I had not fully appreciated my asd as part of my personality I didn't trust my own judgement solely to say I was asd.each to their own

 

[db05]

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. 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).

For me, just over two years since I became aware in late 2021. I was diagnosed about two weeks ago in my late '40s. It didn't make much difference, or so it seemed. As I say, ask me in about 10 years because I've learned that these major life events, take time to sink in and be able to reflect on what really happened.

I had a work social event last week post-diagnosis (many with their NT non-verbal messages relayed to me "What is HE doing here?" while others were more welcoming.) That was a sort of case-study to myself, post-diagnosis, of how everything is wrong, but yet affirming to me of how I'm doing the best I can. We all look back over many years after we know the truth and can evaluate these current events.

Being clinically diagnosed never really mattered to me much but in light of this new knowledge, I am very glad I went through with it, if nothing else for my own knowledge.

Anyone ever read "Look Me In The Eye" by John Elder Robison? Great book from about 2007. John Elder now has a blog with an entry that really made me think deeply. He is having more autistic struggles now in his older age, than he used to. For anyone who became aware later in life, I'd highly recommend it, a short 7-page read:

https://jerobison.blogspot.com/2022/10/getting-older-with-autism-presentation.html

 

[Shevek]

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.

Before Autism got into the DSM, our only option was a harmful misdiagnosis, plus stigma. My mother's mission in life was to avoid being called strange. She did it by avoiding anyone who started looking suspicious of her, such as the counselor I was sent to once. I knew enough to leave him confused about me, too.
When she was dying and my sister was still in distress over her behaviour, I did yet another 'net search and found a list of Aspie characteristics. That was all I needed to explain both her life and mine. Subsequent counselors have had no doubt - I'm quite disappointed that nobody had ever just used a checklist to help me out previously.

 

[Misty Avich]

I'm talking about people who grew up in the 90s and 2000s. When I was diagnosed in 1999 (at the tender age of 8) I thought all children with Asperger's were diagnosed at that age too. It wasn't until I joined an autism site when I was 20 when I actually found out that the vast majority of autistic people of any age weren't diagnosed as children or even adolescents unless they're severely affected.

 

[vergil96]

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.

I didn't have problems at school, it seems like if someone has trouble at school, they get assessed and diagnosed in the process of fixing it. However, the first time I heard the word "autism" was after my first days in kindergarten. I think Asperger's was not a thing yet where I lived, small town, not exactly the center of the world culturally. MY parents were having this Asperger's 101 dispute about me showing signs of autism,crying all the time for unknown reasons, but not being behind with speech or anything like that, actually learning all the skills earlier than most children. My parents are doctors. I didn't know how to play with others, what to say, how to play pretend or did it wrong, things like that. But it was a brief period of time that I had such problems. It disappeared quickly. I had some other traits later, like alexythymia, interpreting some things too literally, systemising heavily. Those also disappeared in childhood as I learnt emotions. But it got noticed on some occasions. And the results were sometimes infuriating, because some people treat people with autism like all had intellectual disability and it was disrespectful.

I've been also wondering how so many people go unnoticed, while I keep on being pointed at as someone "with Asperger's", asked about it and so on - for the wrong reasons, it's not about the things that actually make up an autism diagnosis, but have more to do with stereotypes.

I mean, many people at my school got diagnosed with some kind of learning difficulties, like dyslexia, ADHD, and kept on talking about how it makes their thinking style different. I felt kinda left out with my neurodivergence, I was a good student, but I did feel like a thinking style that wasn't mine and wasn't better was required very often. I didn't feel understood, this is why I felt left out, I felt like others were getting more understanding and more right to speak up, because they had a paper. Or to learn strategies that better worked for them. I still feel like I'm being misunderstood and not offered help. That I know how to do something, doesn't mean it's a good or optimal way to do it.

I'm talking about people who grew up in the 90s and 2000s. When I was diagnosed in 1999 (at the tender age of 8) I thought all children with Asperger's were diagnosed at that age too. It wasn't until I joined an autism site when I was 20 when I actually found out that the vast majority of autistic people of any age weren't diagnosed as children or even adolescents unless they're severely affected.

Seriously? I had no clue.

 

[Captain Caveman]

I'm talking about people who grew up in the 90s and 2000s. When I was diagnosed in 1999 (at the tender age of 8) I thought all children with Asperger's were diagnosed at that age too. It wasn't until I joined an autism site when I was 20 when I actually found out that the vast majority of autistic people of any age weren't diagnosed as children or even adolescents unless they're severely affected.

It is more "Noticably effected". (Of course being physically effected a cause is looked for when young).
Also modern communistic teaching methods now used in the west means that it is harder to "Hide" ones autistic traits than in the past.
But even today is to glaringly obvious how many in both the teaching and medical profession do not have a clue about autism and what it actually is and what to look for, and how to help an autistic person gain access to healthcare or the educational help they need, as though my experience in the education system is now dated, my experience with the NHS system is up to date and many working in that system do not have a clue and refuse to listen when told ones needs (Which are very simple and easy to impliament requests). It is like they refuse to help because to do so is undermining their nursing athority! (Is soms NHS nurses (Blood tests) and NHS receptionists I have the most difficult times with who refuse to acdomodate very simple requests.

 

[Kuzekun]

I was diagnosed at 26. After I had a major meltdown at home and was suicidal I was taken to a hospital where after 24 hours they deemed me fit to return home. After that I sought out a local Mental Health clinic who got me Medicaid and Psychiatric and therapy services. After about three months of therapy my therapist asked if I was ever tested for autism. I replied no and they explored the possibility further explaining alot of what I described in sessions were signs of autism. He then put in a referral for testing and six months later was tested in the same facility as my therapy and psychiatric care. I was officially diagnosed with ADHD and PTSD at the same time. I also have lower than average brain processing speed. So I can be a bit slow in the head lol.

 

[Misty Avich]

It makes me feel more severe than what I actually am, being diagnosed at 8 years old. I read that girls on the mild end of the spectrum aren't diagnosed until adulthood, while children with more severe autism are usually diagnosed between ages 2 and 10.

I just want to be like everyone else here and not been diagnosed until adulthood.

 

[jsilver256]

It makes me feel more severe than what I actually am, being diagnosed at 8 years old. I read that girls on the mild end of the spectrum aren't diagnosed until adulthood, while children with more severe autism are usually diagnosed between ages 2 and 10.

I just want to be like everyone else here and not been diagnosed until adulthood.

I would not read too much into this. Your mother may have been more sensitive, or you actually got taken in for ADHD symptoms and then received an autism diagnosis because ADHD didn't completely fit. And, sad to say, but providers will sometimes "upgrade" a diagnosis to something more severe to fulfill requirements for insurance or schools to more support - autism qualifies for more support than ADHD. And your school district or teacher may have been "sensitive."

My youngest is currently going through the process at kindergarten. He isn't severe by any means, all it means is that right now he needs extra support that the school has difficulty providing him. I had the same issues and had an aide, I wouldn't consider myself severe.

 

[Misty Avich]

I would not read too much into this. Your mother may have been more sensitive, or you actually got taken in for ADHD symptoms and then received an autism diagnosis because ADHD didn't completely fit. And, sad to say, but providers will sometimes "upgrade" a diagnosis to something more severe to fulfill requirements for insurance or schools to more support - autism qualifies for more support than ADHD. And your school district or teacher may have been "sensitive."

Well I guess this was back in the 1990s when ADHD was still only known as a naughty schoolboy. Maybe if I was a kid in the 2010s I might have been more accurately diagnosed with ADHD and anxiety disorder.

My youngest is currently going through the process at kindergarten. He isn't severe by any means, all it means is that right now he needs extra support that the school has difficulty providing him. I had the same issues and had an aide, I wouldn't consider myself severe.

I think I just get confused when I do frequently read about Aspies that grew up in the 1990s or even 2000s when autism was more known about but never got noticed until they're adults. I mean, it isn't just behaviour you show at school, as that can be masked, but the behaviours you show at home too. I don't know what I would have been like at home as a child if I didn't have ADHD. I always grew up thinking autism meant a badly-behaved child with hyperactivity and extra burden on their parents that is so challenging that it can't be missed. I also always thought all Aspies were diagnosed by age 7 or 8.

 

[jsilver256]

This is the kind of thing that would be a lot easier to understand if you are a parent.

A lot of it comes down to compensation and personality. An introverted child who has meltdowns at home and sensory issues, and is scared of everything in general and clings to adults, probably would be mainstreamed in a structured classroom better than a more extroverted child who has an insatiable curiosity about the world (aka, touching/breaking everything) and copes with sensory overload by running away.

 

[Misty Avich]

I guess also some children's parents can be in denial about it? My autistic friend never spoke until she was 8, and showed other signs of autism, but her mother was in denial so she never got an official diagnosis until she was 12.

My parents, on the other hand, were forced to get me assessed and diagnosed, under the threat of being labelled as bad parents if they didn't go through with it. So that was stressful for them, and for me too having to attend appointments where I was forced to sit in a room of adults talking about my behaviour. I felt like I was 'mental' and thought about the other kids at school who didn't need to go through all this.

 

[jsilver256]

I guess also some children's parents can be in denial about it? My autistic friend never spoke until she was 8, and showed other signs of autism, but her mother was in denial so she never got an official diagnosis until she was 12.

My parents, on the other hand, were forced to get me assessed and diagnosed, under the threat of being labelled as bad parents if they didn't go through with it. So that was stressful for them, and for me too having to attend appointments where I was forced to sit in a room of adults talking about my behaviour. I felt like I was 'mental' and thought about the other kids at school who didn't need to go through all this.

Yes, you just named a couple of the many reasons you should not read too much into the age of your diagnosis. Easier said than done, but try to not to dwell on it.

 

[Misty Avich]

Yes, you just named a couple of the many reasons you should not read too much into the age of your diagnosis. Easier said than done, but try to not to dwell on it.

Yes, I know, I guess everyone has their own reasons why that I don't know about. It's a bit like if someone who was diagnosed with ADHD in the 80s or 90s, and they see me with more obvious ADHD behaviours and then are surprised when I say I wasn't diagnosed with ADHD until I was 31. It's like sneaking into a building past loads of security guards and dogs and not being seen at all.

 

[8crismon]

I was ten, my head was big, and my mom was worried it was something else. Went to a doctor, got sensors put on me, and took a nap. A little after that we were told I had Aspergers and ADD. Before that, I was held back in kindergarten for politely declining to do activities.

 

[Hokulea]

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).

About 13 years.

Not long after I left school, my mother suggested that I might have autism and that it might explain some of my difficulties. I think though, I mostly put it to the back of my mind until the autism assessment process.

Apparently also my school suspected I was autistic, but was worried a diagnosis might hurt my career prospects, particularly if I happened to want to go into something like the military. Things haven't gone well for me personally career wise regardless.

It was only after resigning from a job that I ended up talking to someone about my mental health.

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).

About a year and a half.

 

[Misty Avich]

I still so badly wish I wasn't diagnosed with Asperger's in childhood without mine or my parents consent. I mean, what if I wanted to join the army or something? I know I wouldn't in a million years but that still isn't the point. It hinders your life having that crap pasted all over your medical records.

 

[8crismon]

I still so badly wish I wasn't diagnosed with Asperger's in childhood without mine or my parents consent. I mean, what if I wanted to join the army or something? I know I wouldn't in a million years but that still isn't the point. It hinders your life having that crap pasted all over your medical records.

Do you want to be messed up in boot camp or shell-shocked by combat?

 

[Misty Avich]

Do you want to be messed up in boot camp or shell-shocked by combat?

No but that wasn't the point.