Probably not autistic, now I don't know what to do

[Nummulite]

This summer I've been doing a bunch of research about autism, making pages and pages of notes with reasons why I might be on the spectrum, and I got a referral from a doctor to get an autism assessment in a few years. I felt like I was finally on to something after a lifetime of wondering what's wrong with me.


Last week I finally scheduled some time to get together with my parents and ask them questions about my early childhood, since I don't remember it very well.


Apparently I was a completely neurotypical little kid. I hit all my developmental milestones on schedule (speaking and writing in particular), I spoke and listened normally, interacted with other kids normally, played with my toys normally. None of their answers indicated autism. Whatever is wrong with me developed as I got older.


I'm back where I started and I feel completely lost. I can't connect with people, I only have two friends (one is my partner and the other doesn't even live in my province), I don't have a job, I'm scared to learn how to drive, I can't get anything done, and I'm continually overwhelmed by everyday things. I sit at home doing the same useless things for hours on end without stopping to take care of important responsibilities. I'm 28 years old and I'm still struggling to live my life.


I guess the idea of being autistic made me feel better, like all of these things had an explanation that wrapped them up neatly, and best of all it wasn't my fault. Now I'm just stuck with being a non-functional person with a whole bunch of separate problems to try to solve, once again. I'm so tired of going to therapists and psychologists, and trying things that never end up sticking.

 

[tree]

"I got a referral from a doctor to get an autism assessment in a few years."

The waiting list is that long?

 

[Nummulite]

The estimate was five years, very long even for canada

 

[VictorR]

While it's not necessarily the case here, if one or both parents are neurodiverse, they may have difficulty identifying it in others because what many see as differences, they see as normal.

 

[unperson]

so...socially challenged, easily overwhelmed, problems with exec function/organisation skills - could be a number of things. Do you have siblings you could ask? Parental bias, not wanting the stigma in the family can be part of denial.

 

[Nummulite]

I haven't ruled it out completely as a possibility, but it just seems way less likely to me now after that conversation. I don't know if it's worth pursuing still at this point.

My parents are really kind and they were sad when they saw how disappointed I was by their answers and wished they could help. They're definitely not trying to deliberately lie to me or misrepresent things.

I could maybe talk to my older brother about it for another perspective (I mentioned it to him briefly a year ago and he said that he always thought he was on the spectrum).

 

[unperson]

well do you smoke pot? cos those symptoms you describe, you get that in pot smokers, so it's pretty vague stuff there - is there anything more specific that yu do, that makes you think it's autism?....like were you a bookworm as a child, most of us devoured books as children, encyclopaedias, street directories, dictionaries, fiction etc.

 

[Suzette]

You might still be on the spectrum. You know how parents are. "Oh you were fine" "You're just making this up" in order to comfort you and themselves too. I like being around people (usually) and as a kid, I hit all my developmental milestones on time. But I'm such an aspie.

My own mother did not recognize my differences. But they were there. I read early, had very specific clothing choices, stimming habits and, particularly, had social difficulties and cognative differences that were seen as quirks. The cognative differences such as literalisim, not understanding metaphors, miss understanding directions, blunt comments etc caused me to be bullied and teased by my family. Since they saw their own behavior as normal, they missed understanding that these cognative differences were not normal. (I hope that makes sense)

The short version is that our parents often can not see what is before them in part because they don't have experience in spotting differences. And the things they see are easily dismisssed unless you have a gross disability like dyslexia.

These differences can be hidden too. For example, I took ballet as a child. I was pretty good at it, so in my mothers mind I was graceful. But other motor functions were supremely difficult, things like running and catching a ball.

Sorry this is a bit disjointed but you, if you are male, might actually display your a.s.d. more like a female would and could be really good at masking.

 

[Nummulite]

well do you smoke pot? cos those symptoms you describe, you get that in pot smokers, so it's pretty vague stuff there - is there anything more specific that yu do, that makes you think it's autism?....like were you a bookworm as a child, most of us devoured books as children, encyclopaedias, street directories, dictionaries, fiction etc.

I don't smoke weed (nothing against it, but it just makes me anxious).

I wrote 15 pages of detailed notes about why I thought I was on the spectrum, listing it all would be too much (and yes I was always reading as a kid). I scored as "likely autistic" on all the online tests and I seemed to fit the criteria in the DSM-5. My partner is on the spectrum and he thought it was extremely likely.

But without indicators in early childhood, it's not autism. I have a collection of symptoms that technically anyone can have, for a variety of reasons

 

[rach3rd]

Regardless of whether it turns out to be autism or something else, it is still not “your fault”. You are not faking what you are feeling and struggling with. It just can take some time to discover the therapies that work well for you. Hang in there.

 

[unperson]

I don't smoke weed (nothing against it, but it just makes me anxious).

I wrote 15 pages of detailed notes about why I thought I was on the spectrum, listing it all would be too much (and yes I was always reading as a kid). I scored as "likely autistic" on all the online tests and I seemed to fit the criteria in the DSM-5. My partner is on the spectrum and he thought it was extremely likely.

But without indicators in early childhood, it's not autism. I have a collection of symptoms that technically anyone can have, for a variety of reasons

Well, you can and should work on the symptoms you feel are a problem, some shrinks take that approach and it can be an appropriate thing to do while waiting for things to clarify. Why do you feel you need a dx? Do you need income support/welfare?

 

[PastelPetals]

I mean you might be or you might not be either way you are you and you can be just as you are with "quirks" and not autistic. You sound like your very anxious and maybe trying to address the anxiety might be helpful. It seems to be a long way until your assessment but you can address some things with therapy or at home skill building yourself. If you can look back and see where these symptoms started that might help and look into the differential diagnosis for autism to see the overlap. You are correct you need early in life delays since autism is a developmental disability but I am not your parents or a doctor and I don't know you so I won't say yes or no either way but please know you are valid and what you are feeling is real no matter if it's autism or not. I wish you nothing but good things in your journey.

 

[Thinx]

So, how much do you recall about your childhood? How did you actually feel, as a child? What was school like for you? Did you have friends? Was it easy to make friends? Were you outgoing, or more reserved? Did you play in team sports? Were you popular? What did you do outside school? What were your interests? Did you socialise with other children or young people outside school? Did you do activities with others? Were you happy? If so, what made you happy? What was difficult for you? What made your brother think he was on the spectrum?

It's clear that a lot of people weren't recognised as autistic in early life. Even now, a lot of young people aren't diagnosed until they start to falter or feel beyond their skills with social demands of life at school or college, and others aren't diagnosed until they have a child who is diagnosed.

So, you may be on the spectrum, but if you recall a childhood full of social success, sociability, friendships and popularity it's less likely, although probably there are some who can. It's a spectrum. Either way, clearly things aren't ok now, and you need to know why, and get some help.

 

[Nummulite]

Well, you can and should work on the symptoms you feel are a problem, some shrinks take that approach and it can be an appropriate thing to do while waiting for things to clarify. Why do you feel you need a dx? Do you need income support/welfare?

Knowing the cause of my problems would change the way I approach some of them. For example, if the reason I'm awkward and feel disconnected around people is that I don't have enough experience socializing, then exposing myself to more social situations should solve the problem (it doesn't feel like it's been helping, but I might have just not given it enough of a chance). But if I were on the spectrum, I would instead focus on accepting my differences and maybe find autistic social groups to better connect with (my city has a meet-up group for this).

A diagnosis could help with giving me access to some social programs to help me with a job or certain kinds of therapy, but the assessment is so far in the future that I didn't look into that in detail yet.

I've seen therapists and psychologists off and on ever since I was a teenager. We've worked on some of my problems and I think they helped a bit but it's slow and incomplete progress. I'm going to go to the doctor again soon and ask for help again but I'm not looking forward to it.

 

[MyLifeAsAnAspie]

I read your post assuming you were male. Looking back over it I see I had no reason to think that.

That does make a difference as I'm sure you know. For females aspies, early childhood traits are not very noticeable. However by high school social communication issues should be apparent. You must remember that part of your childhood.

 

[Suzette]

But if I were on the spectrum, I would instead focus on accepting my differences and maybe find autistic social groups to better connect with (my city has a meet-up group for this).

You can accept your differences whether you are on the spectrum or not. That is, to my mind, a part of becoming an adult. Accepting yourself just as you are.

You might go to an aspie meetup just to get to know what other neurodiverse people are really like. It might be educational for you and no one is going to kick you out for not being "a card carrying autie". Just be open and honest about your intentions if you go.

 

[Nummulite]

So, how much do you recall about your childhood? How did you actually feel, as a child? What was school like for you? Did you have friends? Was it easy to make friends? Were you outgoing, or more reserved? Did you play in team sports? Were you popular? What did you do outside school? What were your interests? Did you socialise with other children or young people outside school? Did you do activities with others? Were you happy? If so, what made you happy? What was difficult for you? What made your brother think he was on the spectrum?

It's clear that a lot of people weren't recognised as autistic in early life. Even now, a lot of young people aren't diagnosed until they start to falter or feel beyond their skills with social demands of life at school or college, and others aren't diagnosed until they have a child who is diagnosed.

So, you may be on the spectrum, but if you recall a childhood full of social success, sociability, friendships and popularity it's less likely, although probably there are some who can. It's a spectrum. Either way, clearly things aren't ok now, and you need to know why, and get some help.

That's a lot of questions!
I recall my childhood after six years old or so. I got very good grades but had trouble handing things in on time. I had one best friend from kindergarten to 8th grade who I did almost everything with. I had a couple other friends but not very close ones. I was very shy and didn't know how to make friends. I didn't play any sports, and people usually picked me last when choosing teams in gym. I wasn't bullied, but I wasn't popular and I kept to myself. I spent most of my time drawing, reading, or on the computer. I loved dragons. My best friend and I thought we were secretly dragons from another planet, and we would talk about that a lot. I was happy, but I was anxious and I cried a lot and got tired easily. We didn't talk about it for very long, but he said it was partly because he had trouble connecting with others and was very rigid about his routines.

 

[unperson]

yuh, have yu ruled out schizoid? cos for you not to have developmental delays in childhood, but be socially averse, well it springs to mind.

In any case you may as well hang around here, maybe it'll help you decide.

 

[Nummulite]

I read your post assuming you were male. Looking back over it I see I had no reason to think that.

That does make a difference as I'm sure you know. For females aspies, early childhood traits are not very noticeable. However by high school social communication issues should be apparent. You must remember that part of your childhood.

I was born a girl (I've never mentioned my gender on here because I'm nonbinary and I feel weird talking about it)

 

[Nummulite]

You can accept your differences whether you are on the spectrum or not. That is, to my mind, a part of becoming an adult. Accepting yourself just as you are.

You might go to an aspie meetup just to get to know what other neurodiverse people are really like. It might be educational for you and no one is going to kick you out for not being "a card carrying autie". Just be open and honest about your intentions if you go.

I know that that's true, but it's harder without a concrete "reason" for the way I am.
I might still go, maybe I'll bring my partner with me.