Autism support and knowledge (both adult and childhood)

[Phoenix87x]

Just curious if anyone here has been diagnosed with autism as an adult or child (or suspect that you may have autism)

Are there things you do to help manage it?

And If you were diagnosed as an adult where do you even go to pursue a diagnosis? Every place seems centered on childhood autism and not adult. Is it even worth trying to get a diagnosis or just try and manage on your own?


Of course anyone that has a child or relative with autism I encourage you to share your thoughts and experiences as well.

[Adami]

Not on the spectrum myself (to my knowledge) but have worked with both kids and adults who were.

I will say one thing, while it depends on how far along the spectrum you are, an adult diagnosis can be life saving. I had a client who didn't get diagnosed with ASD until she was in her mid 20's or so and it completely changed her life. She finally understood WHY she experienced things the way she did, and it provided a necessary context to everything else she was going through that completely redirected all of her treatment after. It saved her life.

[TAC]

Is it even worth trying to get a diagnosis or just try and manage on your own?

Hell YES!

Do you think you're autistic?

[Phoenix87x]

Not on the spectrum myself (to my knowledge) but have worked with both kids and adults who were.

I will say one thing, while it depends on how far along the spectrum you are, an adult diagnosis can be life saving. I had a client who didn't get diagnosed with ASD until she was in her mid 20's or so and it completely changed her life. She finally understood WHY she experienced things the way she did, and it provided a necessary context to everything else she was going through that completely redirected all of her treatment after. It saved her life.

Very good points. Thank you

Do you think you're autistic?

Possibly. Not totally sure though.

Lately I just been trying to work on being a better person and a huge part of that is having a better understanding of myself. And a lot of the adult autism symptoms I experience:

1. Sensory overload, so hypersensitivity to sound and too many people being around. Sometimes light, but not often
          -having to self sooth and do stimming to "distract" myself if there's too much stimuli going on
          -I also notice very small details which others miss

2. Can't look people in the eye

3. Terrible at social situations (but learning to get better). Anxious and overwhelmed if there's too many people. Don't get social norms and will just be blunt and say what I'm thinking with no filter (not trying to be mean), just not thinking to filter

     -Also, its hard to understand what other people are thinking and feeling. 

4. Routines, sticking to them and being a creature of habit

5. Strong interest in certain things, sometimes getting obsessive.


So I do think I will get checked out.

[TAC]

Do you think you're autistic?

Possibly. Not totally sure though.

Lately I just been trying to work on being a better person and a huge part of that is having a better understanding of myself. And a lot of the adult autism symptoms I experience:

1. Sensory overload, so hypersensitivity to sound and too many people being around. Sometimes light, but not often
          -having to self sooth and do stimming to "distract" myself if there's too much stimuli going on
          -I also notice very small details which others miss

2. Can't look people in the eye

3. Terrible at social situations (but learning to get better). Anxious and overwhelmed if there's too many people. Don't get social norms and will just be blunt and say what I'm thinking with no filter (not trying to be mean), just not thinking to filter

     -Also, its hard to understand what other people are thinking and feeling. 

4. Routines, sticking to them and being a creature of habit

5. Strong interest in certain things, sometimes getting obsessive.


So I do think I will get checked out.

Sure, those could all be symptoms. Yeah, definitely get checked out if you want. There are places where you could go. We asked our son's pediatrician (he was still 18 or 19) where he could go because we needed an updated eval for him so we could start applying for services. So I would recommend asking your doctor for a reference.

Seems if you are autistic, you're pretty high functioning, so that's good.

[LithoJazzoSphere]

I occasionally ponder this.  Self-diagnosis is tricky, and some people label themselves and just think it gives them license to be an asshole.  I think there's a fine line between autism, especially milder forms of Asperger's, and general social awkwardness and/or nerdiness.  I've never been diagnosed, and I don't think I actually have it, but would imagine that I'm closer than the average person to a high-functioning, milder version of Asperger's.  I've taken a few online tests out of curiosity and I do normally check more boxes of the classic symptoms than is typical, but not quite in the "get help now" range. 

At least one of my cousins actually has a diagnosed version of it, and another has something similar, but a bit different, I don't recall if there was a name for it.  Both are relatively high-functioning, but definitely have a lot of quirks and histories in how it manifests and trying to treat it.  I have other friends and acquaintances who have versions of it, and calling it a "spectrum" is certainly true, there are so many levels and expressions of it. 

[Stadler]

I cannot stress this enough:  given that he is who he is and that wasn't going to change, the day we got my stepson diagnosed as being on the spectrum was probably the BEST day of his life in terms of his emotional and physical development.  "They" (I hate the "they", like it's some big conspiracy; but by this I mean those entrusted with his psychological well-being at school) had him down as "oppositional deviant disorder".  With that, there's a protocol; he was in a special classroom and if there were any "event", there was a standard response, up to and including physical restraint.   He was being physicially restrained about weekly at school.  Finally, after one event, he was put on a stretcher, bound, with a face mask (think "Hannibal Lecter" and you're close) and taken to the local Children's Hospital.  We finally said 'enough is enough' and got an independent psychological evaluation done (the school, by law, should have paid for it, but it would have cost us dollars to recoup pennies, relatively speaking, even though the test itself was not cheap).  The determination was that he was on the spectrum, with sensory processing disorder, albeit, high functioning.   

He hasn't been restrained once, not once, since then, and is now in high school, in the general population full time.

He's got a long way to go to be a high functioning adult on his own, but he can - and WILL! - get there.   He's got other things going on that aren't his fault (I've written about Dad; he's still on top of his "asshole" game) but in terms of HIM, we have a path forward, and a plan to maximize his potential. 

(As an aside; they don't use the term "Asperger's" much anymore, it's called "on the spectrum", and I think that's apt.  It IS a continuum.  I've asked about it with my therapist and she's pretty clear that we all have some traits or tendencies that, in a vacuum, might be indicative of being "on the spectrum", but it's really a comprehensive diagnosis.  I do strongly feel, though, that "the more you know" is better, to help you lead a satisfying life.)

[Adami]

It's also really important to distinguish between different diagnoses that have a lot of overlap. For instance, kids with high anxiety often get mistakenly diagnosed ADD or ADHD because of the symptom overlap. Gotta be able to distinguish social phobia from schizoid. Gotta separate borderline from bipolar etc.

Similarly, you have to separate ASD from being a Dream Theater fan. There's just a ton of natural overlap.

[Phoenix87x]

Well, I was formally diagnosed with Autism today.

All I'm gonna say is this is such a massive relief and I feel like a turning point my life. I've felt tremendously guilty for being strange and acting in a way that people got upset by for SOOO many years and It feels so utterly incredible to not have to feel that guilt anymore.

I will now continue to work with this psychologist on finding balance and the healthiest ways to live with this condition going forward.

[Harmony]

Good on you for following through with going through with the evaluation.  I know that can be an intimidating process.  But as you say, now you can move forward with learning more about ways to adapt to challenging situations and new understandings around things to gravitate towards and things you avoid and why.

[Stadler]

I think I've written this before, but all things considered, the day my step son was diagnosed as being on the spectrum was one of the best days of his emotional development, not just for him but for us, the family.  It gave us all a language, a set of tools and a context.  Before that we're were flailing.

[Nick]

My wife is a BCBA, and she enjoys and works exclusively with adults. That being said, it is 10x easier, at least in PA, to get support and resources for kids. The foundation she works for has so many people and resources for helping kids with autism and developmental disorders. Meanwhile my wife IS the entire department for adult support.

[twosuitsluke]

Well, I was formally diagnosed with Autism today.

All I'm gonna say is this is such a massive relief and I feel like a turning point my life. I've felt tremendously guilty for being strange and acting in a way that people got upset by for SOOO many years and It feels so utterly incredible to not have to feel that guilt anymore.

I will now continue to work with this psychologist on finding balance and the healthiest ways to live with this condition going forward.

Great news dude. It must be such a relief to get a formal diagnosis, I'd imagine. My wife's sister has recently had a diagnosis at the age of 26, here in the UK, and feels like she is finally understanding why she acts the way she does in certain situations, and can come to terms with the fact she wasn't just a naughty/difficult kid. She's also been open about a lot of the masking behaviour she has and she has stims that she hides from everyone.

My wife and I are also in the process of getting a diagnosis for our 3 year old son. Both of us have worked with adults and children with various support needs, including autism, and there is no doubt to me he had autism. We're in the process of applying for an Educational Health Care Plan to ensure he has the support he needs by the time he goes to school. It's been really stressful as my wife worries loads (has anxiety and possibly undiagnosed ADHD herself) and can't stop worrying about our sons future.

Kinda glad to see a thread here. Tim has been kind enough to reach out in the past, after I posted about how much I can relate to Coheed and Cambria's latest record (which has parallels to parenting a child with autism), which I really appreciated. Love to you all.

[hunnus2000]

If I may ask a question, how does the diagnosis happen? Is it chemical? Is it a verbal evaluation?

I'm just curious is all.

[TAC]

If I may ask a question, how does the diagnosis happen? Is it chemical? Is it a verbal evaluation?

I'm just curious is all.

So for my son, it was an array of testing. Cognitive, memory, verbal, observational..that kind of thing.

[Stadler]

If I may ask a question, how does the diagnosis happen? Is it chemical? Is it a verbal evaluation?

I'm just curious is all.

So for my son, it was an array of testing. Cognitive, memory, verbal, observational..that kind of thing.

Same here, I think.  For us, it was two days of comprehensive written, oral and observational testing (including us parents taking an extensive evaluation).

[TAC]

If I may ask a question, how does the diagnosis happen? Is it chemical? Is it a verbal evaluation?

I'm just curious is all.

So for my son, it was an array of testing. Cognitive, memory, verbal, observational..that kind of thing.

Same here, I think.  For us, it was two days of comprehensive written, oral and observational testing (including us parents taking an extensive evaluation).

Interesting. My wife and I were never part of the evaluation. My son had Early Intervention very early on, and I'm sure they were keeping a keen eye on us as well, as they were in home visits.

[Phoenix87x]

Thank you everyone.

And yeah, it was a combination of questionnaires and then 3 hours of face to face interviewing and questions all while being observed for physical stuff (like stimming, fidgeting, lack of eye contact or peculiar posture and over response to stimuli)

[Adami]

Yea. There’s no standard method of evaluating for ASD. Symptoms need to be met and therefore necessary data has to be acquired and that can look a number of ways. It definitely needs to be done by people who really know what to look for and how to discern similar symptoms that aren’t ASD.

And for kids, interviewing parents or even teachers can be VERY helpful and often necessary.