How do you know if you're autistic?

[ivegotamillionkids]

Posting for traffic and don't know how to vote as I'm on the app but...

How do you know?

I'm approaching 50 and not been formally diagnosed, but I have felt different my whole life.

Did you just go to your GP and say you've always felt different? How does this work? So fed up right now.

I have never felt 'normal' my entire life, and Christmas brings this home Every. Single. Year.

I just want it to all go away. And never see a person again. I would love to just live in my own little bubble of loneliness on a desert island. And then it would probably still be weird!

Anyone want to join me?

“It's quite rare for an autistic child not to have at least one autistic parent.”

That’s interesting, is there any proven studies on that? I do know a few children with autism but none of their parents do. Unless they are just undiagnosed which is possible

I think I am, my dp thinks I am, I score high on the online tests and my eldest dc is diagnosed.
My parents do not think I am but I remember feeling many things they just weren’t aware of. I’m mid 30s and don’t see what an assessment would achieve now, although I am curious.

Spectrum explanations

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

Anyone can have traits, but to be given a diagnosis, someone must meet the criteria.
"The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. "

It's the limit and impair everyday functioning bit that counts.

I am just over 50 and self diagnosed relatively recently partly due to noticing some similar traits in my mother that she doesn't mask so well as she gets older. I work with people with LD and/or autism which has given me a pretty good insight.
Just a few examples. I really struggle when interrupted mid conversation if someone changes the subject - I now fight the need to finish what I started saying. Often don't "get" jokes or takes things very literally. Lots of routines in my day though not a problem varying it too much. Struggle with maintaining long term deep friendships though appear to get on with lots of people. Find many social situations totally exhausting. For an example an annual "girls" reunion weekend that I have done for the last 30 years causes me huge stress in the weeks leading up to it and during. I tend to go because I want to see everyone but by the end I am totally drained. This year I didn't go and felt huge relief but then worried what I had missed.
I can't decide if getting a diagnosis (private or waiting the 2 years + locally for NHS) is worth it. I don't especially need a label I just need to understand my limits socially as this is what causes me the most stress.

Tbh I didn’t know the HFA was an outdated term and often use it to describe my ASD teen. Most people he meets have no idea he’s autistic until spending some time with him, he hides it very well and has learned hundreds of coping mechanisms with age. He’s not comparable to many others with autism in terms of his needs, and things have improved drastically with age, although obviously has glaring differences from his peers so I’m not sure how else I’d describe him 😐

@Allthepickles

Tbh I didn’t know the HFA was an outdated term and often use it to describe my ASD teen. Most people he meets have no idea he’s autistic until spending some time with him, he hides it very well and has learned hundreds of coping mechanisms with age. He’s not comparable to many others with autism in terms of his needs, and things have improved drastically with age, although obviously has glaring differences from his peers so I’m not sure how else I’d describe him 😐

Autistic? That's how I describe myself. I don't need to add anything to it. Autistic is just fine.

@Paddingtonthebear

“It's quite rare for an autistic child not to have at least one autistic parent.”

That’s interesting, is there any proven studies on that? I do know a few children with autism but none of their parents do. Unless they are just undiagnosed which is possible

Often the parents have absolutely no idea. One of my autistic children has very high care needs. She was 16 before I realised it about myself. Then, when I was tested my scores were more than double needed for a diagnosis.

In my family there are a lot of clearly undiagnosed autistic people (including my own father). When your whole family has a lot of autistic people in it then you aren't going to necessarily stick out as someone who clearly needs help. Even though I've struggled with a lot of things all my life.

When your whole family has a lot of autistic people in it then you aren't going to necessarily stick out as someone who clearly needs help.

Yep. When I told my Dad I was going to go for an autism assessment I gave a few examples of things from many years ago - he just replied (talking over me before I had even finished) about what it was like at school and home in his day etc etc but every single example he gave me to dismiss my reasons actually were just reasons which also apply to him. I have tried but he just sees everything as 'normal'

@MintJulia

Mine is a combination of speech issues and tiptoe walking as a child that lasted into adulthood. I'm not very good at relationships, found physical affection difficult as a child. My DM referred to me as Wednesday's Child.

I can focus on a problem for much longer than most people, and am described by one of my family as horribly logical. I can manage small gatherings but loath crowds. I've got better at managing relationships as I've got older but I know I mask and am often exhausted by it.

I haven't bothered getting a diagnosis either. There are very few services available for adults and at my age, I don't see what help I could be offered. I've managed a career and am financially stable so I wouldn't qualify for that sort of help. I can't wait to retire so I don't have to pretend any more.

This describes me very well. I was also referred to as Wednesday's Child!

I am extremely logical which enabled me to do exceptionally well in my career. However as an adult I am a difficult person to live with, and have been told that I expect too high standards in others and lack empathy. I am not sure it is true but I know I come across that way as I find social conversation (without unintentionally offending people) very difficult.

I am convinced my DF was autistic (he was well-intentioned but often missed social clues and was much too blunt, as am I). My DS also showed many autistic traits as a child, although not formally diagnosed. His autism led me to home-schooling as the system just wasn't working for us and it became to hard to continue with school.

I have done the quizzes and scored highly but have never seen the point of a formal diagnosis. I may be slightly odd, but am able to cope as an adult. I worry that my son shows tendancies to become a hermit because life is just too hard for him. Trying to find a job/career that suits him and his personality is now our biggest challenge. Again, I am not sure that a formal diagnosis would help.

I’m a bit wary of people doing online quizzes to diagnose themself if I’m being honest.
I don’t mean this critically , or nastily
It just doesn’t sit with me

And maybe this is down to not quite believing our own diagnosis , from a very experienced psychiatrist

Where do we draw the line between autistic traits and autism itself?

I also don’t understand why HFA is offensive , primarily as this term was used in the diagnosis letter . Who do I listen to , a psych or someone on MN

Sorry it’s new and raw for me , but as diagnosis and awareness ramps up I think there are going to be more diagnosis of ‘HFA’ societally

2022 is going to be a year when I educate myself on this issue better
It’s just where to start

Google Scholar is a good place to start. There is lots of peer reviewed material available to read freely. You'll also find evidence of heritability, and that it isn't a simple "you are or you aren't" - there are three levels of diagnosis based on levels of support required. It is a complex area, filled with people with strong feelings. Fortunately there is now also a huge amount of academic study to counter balance the heresy.

I’m a bit wary of people doing online quizzes to diagnose themself

Online quizzes can only give an indication of having enough traits to then proceed to ask for an assessment.

They can't do more and certainly no-one should be self-IDing with any neurodiversity unless they have many more traits of that neurodiversity than a simple quiz can pick up.

Many traits are common in more than one neurodiverse condition, and it's also possible to have more than one neurodiverse condition per person, that's why a professional assessment, often done by a multi disciplinary team is necessary for a medical diagnosis.

So many people on here see a few traits in an online quiz, self-ID then preach how a full assessment is not necessary because they can cope easily with all facets of life as a neurodiverse person.

At best that's utterly misleading for the genuinely neurodiverse, at worst it's devaluing what it's like to be genuinely neurodiverse.

Where do we draw the line between autistic traits and autism itself?

Traits are just that, traits. Autism requires a diagnosis based on impairments/defecits in social communication.

Many people may display what have sadly become known as 'autistic' traits, when actually they are just more common among autistic people, bit NT and other neuro diverse people can have similar behaviours.

I also don’t understand why HFA is offensive , primarily as this term was used in the diagnosis letter . Who do I listen to , a psych or someone on MN

You listen to other autistic people who ask you not to use it because it is damaging to the autistic community and encourages ableism. Is that clear enough?

DH is autistic. He was diagnosed when he was in medical school in his mid 20s. I think I knew he was ‘different’ when we first met. He does struggle socially a lot. He works full time as a doctor and an academic. He has very few friends and work is very much his ‘safe space.’ He is a kind, generous, empathetic man but sometimes I have to be very direct in communicating with him.

For example (and a tiny one) it’s his birthday soon and I am making him X dish. I hate X. Can’t stand it. Almost makes me heave. But I am making it because DH loves it. So I told him that I was making it for him. And he was utterly baffled and couldn’t get why this was an act of love/generosity on my part. As far as he’s concerned I hate it and he still doesn’t fully understand why I am making it. Now I am not going to make a big deal but with some other more important stuff I do get frustrated. He knows I do so he will listen and accept my judgement but I know he doesn’t always understand how my brain works and vice versa.

Anyone new to autism should watch this woman's videos to understand why functioning labels are harmful to autistic people. She explains it very well.

vm.tiktok.com/ZM8wkyV37/

vm.tiktok.com/ZM8wkk9r5/

I’m the mother and daughter of a ds and df with autism and I’d encourage anyone, of any age to pursue a diagnosis.

We have a long way to go as a society in terms of accepting differences. Having a diagnosis changes the conversation sometimes and that can matter a lot in healthcare and medicine. I don’t fully understand why it’s not enough to say “I need x/I can’t tolerate y/z makes me feel uneasy” but when you add the word autism you get moved from the awkward category to the genuine needs.

Ds has me to advocate for him but when df was in hospital alone during lockdown he ran into difficulties, because he was seen as awkward and non compliant.

A friend of mine who was diagnosed in her 40s said it was life changing. Her OT support was able to get work accommodations for her.

I have traits, my DH has traits, many of his family members have traits. I really do believe that ASC is genetic. My DCs have ASC diagnoses because of the limiting and debilitating aspects on their life.

Traits vs autism? In my family it's pretty clear that the older generation have managed (happily/easily or no) to build a life for themselves, jobs and marriage.

In the younger generation it's almost as if the traits have become "concentrated", resulting in autism. That's just my personal experience and opinion.

It's true that online quizzes will only provide a guide, definitely not a diagnosis. And it would make a mockery of autism for people to self-identify into it - it's not something autistic people can identify out of, there's no choice. So I would vehemently disagree with "societal" diagnosis as PP mentioned.

I score high on these quizzes.

But I get frustrated with them.

They seem to fucus on aspects of this condition that I don't feel are that important but fail to ask about the things that really impact my functionality eg hypersensitivity, need for routines/ rigidity.

Anyone who knows about autism would recognise it in me within 5 minutes of meeting me. It's very obvious.

I'm sure both of my parents are autistic. Neither have a clue. From what I've heard about my grandparents it seems likely 3 of them had it. I believe I only have 1 blood relative who isn't autistic.

Itsnotover

I accept your feedback , and I’m listening

Where I struggle is the wide range of challenges associated with one word , term

So for example children who attend special schools and parents who get no respite and live in a terribly challenging way , kids who are non verbal etc -where it’s evident from a very tender age developmentally
That poor son and his poor mother , where she flipped and killed him in lockdown etc

I feel uncomfortable with saying my son has
the same named diagnosis as them . I feels like I’m taking the piss to be honest !

I preferred the term Aspergers as that removes the nuance of functioning and ableism but better describes what he has

I’m in another community that’s full of asd teens with the same issues as my kids , and that’s where I can breathe and say it’s not me being a shit parent - it’s a thing , and I’m not alone

Sincerely all and any links I’ll read them as I’m really struggling here

Deep down I think /fear that the psych diagnosed too fast and it’s all my fault for the divorce and being a weak parent

Floundery

I’m Embarrassed to share this but when my son was 5 I was convinced he was in the talented and gifted category . I never told anyone , and he wasn’t !
I do laugh at myself now about it
PFB

Deep down I think /fear that the psych diagnosed too fast and it’s all my fault for the divorce and being a weak parent

This may help, NAD diagnostic criteria.

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Aarrgghh NAS !!!