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

[Nummulite]

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.

I have a family member who likely is (my family thinks he is, but he won't get help). It hasn't been brought up as a possibility for me before, but I can look into it. I hope I'm not.

 

[Thinx]

What you recall does seem like you have always had challenges with social interaction, but coped. Despite that, you were not able to join in with team sports effectively. But adult life is even less sheltered, and more challenging.

I'm non binary too, but female socialisation does tend to equip a child to mask and be less visible as different, to seem shy rather than odd or disruptive, as female socialisation includes being expected to listen to and accommodate others, and to attempt to be 'good'.

Try googling autism in women. Jessica Kingsley publishers have a range of books about the different experience of girls and women on the spectrum.

For diagnosis they are interested in what you experienced as difficult or challenging, many with Aspergers/ASD1 ticked all the milestones academically. Challenges in social interaction and making friends are often central. People socialised as girls tend to handle those and other challenges more quietly and less noticeably than some socialised as boys.

 

[Nummulite]

What you recall does seem like you have always had challenges with social interaction, but coped. Despite that, you were not able to join in with team sports effectively. But adult life is even less sheltered, and more challenging.

I'm non binary too, but female socialisation does tend to equip a child to mask and be less visible as different, to seem shy rather than odd or disruptive, as female socialisation includes being expected to listen to and accommodate others, and to attempt to be 'good'.

Try googling autism in women. Jessica Kingsley publishers have a range of books about the different experience of girls and women on the spectrum.

For diagnosis they are interested in what you experienced as difficult or challenging, many with Aspergers ticked all the milestones academically. Challenges in social interaction and making friends are often central. People socialised as girls tend to handle those challenges more quietly and less noticeably than some socialised as boys.

I've researched how autism presents in women, and I did think that my general childhood experience lined up closely with it. But my early childhood (before I was in school, and before there was much chance for me to be socialized or learn how to mask) doesn't sound like it had any indicators. From what I understand, regardless of gender, autistic people always show certain signs as toddlers (which they might then learn to hide as they get older)

 

[Au Naturel]

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.

Your parents wouldn't have a clue. Most parents are oblivious to such things.

Hitting developmental marks on time is irrelevant. I spoke and listened "normally," played with toys "normally." But parents always assume their kids are "normal." Their opinions can not be taken as useful.

I hit all of my developmental targets on time or ahead of schedule. That has nothing to do with mild autism. I was walking and talking at 9 months and that had nothing to do with it.

If you do not remember your childhood well, how do you know you "interacted with other kids normally?" Again, parents see what they want to see and are extraordinarily unreliable witnesses. Ditto siblings and teachers.

If none of the psychologists and therapists suggested you are autistic, yet none of their suggestions "stuck," that's clear evidence none of them got to the bottom of your condition. Meaning you could well be autistic in some sense and since that wasn't what they were looking for, they wouldn't see it. I saw a dozen different psychologists, psychiatrists, and therapists over the decades. None of them twigged to it. I just seemed too normal.

Lots of ASD-1s fall through the cracks this way. We mask well enough to "get by" while mental health people only take notice when the symptoms are pronounced. The school system I worked for would work very hard to avoid an autism diagnosis because then they have to offer special services. Parents often cooperate in this because "Not my child!" Or simply refuse to let the kid be tested.

Autism in females is notoriously underdiagnosed. The symptoms can vary from those of males. It wasn't until only recently that it was recognized that women could even be autistic and that bias lives on.

Autism—It's Different in Girls

Worrying about "fault" is a fool's game. Children need to say it's the other guy's fault out of fear. Adults say it's their own fault out of guilt. The wise man understands that the very concept of "fault" is the problem. It merely is what it is.

 

[Skittlebisquit]

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?......

That's a frightening set of questions.

@Nummulite I admire your courage and candor. Self assessment is challenging. You are a cherished and well respected member of this community. Fear not

 

[Skittlebisquit]

Wow do I dare?

1. Very little. 2 at risk. 3 a haunted house at night. 4 not really. 5 no. 6mixed. 7no. ********** *******
11 escaping pursuit for various things. 12 Only other heathen outcasts who acted like war zone refugees. 13 long walks thru lonely deserted urban and industrial wastelands. 14 "happy" is that the same as dry socks, warm blanket, no bugs, no sores, full belly, not wounded?

 

[Crossbreed]

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

Even if your gender "identity" is less concrete, your physiology is going to impact your neurology in predictable ways.

 

[Nummulite]

Even if your gender "identity" is less concrete, your physiology is going to impact your neurology in predictable ways.

I wasn't making any sort of argument against that, I was just explaining mine since a couple people mentioned gender and I don't have mine listed

 

[Progster]

Autistic people learn coping strategies, so it's not just about the outward appearances, but how you feel inside. You may be doing fine, you might be able to cope in social situations, but that makes you very anxious, feel overwhelmed and by the end of it you feel exhausted and need time to recover.

It's also not about what activities you do, but how you do them. For example, you play with other kids, have friends, but what is the nature of the relationship? How do you play with them, is it around a hobby or 'special interest?'

Also, it's common for autistic people to have one friend, or two even, but difficulty with groups. How do you cope with friendship groups/social groups? Can you integrate and follow the conversation easily, join in easily? Do you feel part of the group? Or do you feel cut off and isolated?

 

[Thinx]

I expect with all you've already read, you've seen that there's issues around diagnosis, and the criteria used, and whether these are definitive, or applied the same by different people when diagnosing, etc. This is particularly evident in diagnosis of women/ people born and socialised as female. What you say about your childhood sounds as if it could be consistent with being on the autistic spectrum.

You could try assuming you are in that category, and see if using that as a guide to manage issues you are up against is helpful.

 

[Alexej]

Hi @Nummulite

You have been doing a lot of research on this topic which is good and so far your conclusion was that the autism fitted you are a way of describing how and who you were. Then you looked at your early life and the evidence there did not match the expected pattern, and you are now doubting the conclusion you had previously come to.

I was diagnosed about 2 years ago (aged 64) and there was very little said/asked about my childhood. So I would encourage you to hold on to the conclusion you have already come to and keep reading and seeing if what you read about how autism manifests fits.

 

[SDRSpark]

I wrote 15 pages of detailed notes about why I thought I was on the spectrum,

That right there isn't something a neurotypical person would do.

Others are right in that parents often don't see it. My mother didn't, until she took the raads-R and scored within 10 points of me LOL! She thought I was normal because I was "just like her".

It's common for (forgive me) "high functioning" autistic people to hit or even exceed developmental milestones. It's why we often didn't get diagnosed as children.

 

[Nummulite]

Autistic people learn coping strategies, so it's not just about the outward appearances, but how you feel inside. You may be doing fine, you might be able to cope in social situations, but that makes you very anxious, feel overwhelmed and by the end of it you feel exhausted and need time to recover.

It's also not about what activities you do, but how you do them. For example, you play with other kids, have friends, but what is the nature of the relationship? How do you play with them, is it around a hobby or 'special interest?'

Also, it's common for autistic people to have one friend, or two even, but difficulty with groups. How do you cope with friendship groups/social groups? Can you integrate and follow the conversation easily, join in easily? Do you feel part of the group? Or do you feel cut off and isolated?

I know how difficult those things are for me internally now, and how they were in my later childhood, but I can't remember my early childhood enough to know what they were like back then.

Maybe I could try to ask my parents for more detail, but I'm not sure if they would remember (or if they would have been able to tell at the time). It might be worth checking though

 

[Nummulite]

You could try assuming you are in that category, and see if using that as a guide to manage issues you are up against is helpful.

My partner gave me the same advice. It's hard for me to go about my life as if something is true when I don't know if it is yet, because the doubt is so distracting, but I think you guys are right that it's the most useful way to approach things right now. At the very least, maybe I could bring my notes when I end up seeing a therapist again, as a way to organize my thoughts about my problems.

 

[Nummulite]

Hi @Nummulite

You have been doing a lot of research on this topic which is good and so far your conclusion was that the autism fitted you are a way of describing how and who you were. Then you looked at your early life and the evidence there did not match the expected pattern, and you are now doubting the conclusion you had previously come to.

I was diagnosed about 2 years ago (aged 64) and there was very little said/asked about my childhood. So I would encourage you to hold on to the conclusion you have already come to and keep reading and seeing if what you read about how autism manifests fits.

That right there isn't something a neurotypical person would do.

Others are right in that parents often don't see it. My mother didn't, until she took the raads-R and scored within 10 points of me LOL! She thought I was normal because I was "just like her".

It's common for (forgive me) "high functioning" autistic people to hit or even exceed developmental milestones. It's why we often didn't get diagnosed as children.

Originally I was thinking of dropping the autism idea entirely and moving on (I don't want to waste hope and energy if the chances are very low), but I'm starting to think it might still be worth it to keep pursuing the possibility, or at least thinking about my problems through that lens until I find a better explanation.

I really appreciate everyone's responses, you've all given me things to think about. This thread was more useful and hopeful than I thought it would be.

 

[Raggamuffin]

My parents had to answer a questionnaire before I had my ADHD assessment. They were under the impression I was normal, nothing wrong with me. Teachers never said anything etc. I wonder if they see ADHD and ASD as some sort of reflection on their parenting.

In the end I scored full marks on the ADHD assessment.

Even now, they don't really fathom the day to day struggles it involves. In fact my mum was quite confrontational toward me last Friday whilst highlighting various things I wasn't doing and saying (yet again) that I'm wasting my potential and not doing enough.

Ed

 

[James45]

It is an interesting situation, prior to being diagnosed I thought that if it was a positive result I would finally have something to guide me through my desire to improve my life.

Knowing I was on the spectrum would enable me to 'solve' (or at least find peace with) some of my issues, however I have a fair chunk of PTSD in the mix, and really a year later I am still as confused as ever.

Point being, label or not, the most important thing is to decide what you want to change and take small steps to get there.

It sounds like you know in your heart you are on the spectrum, then accept that on a personal level, if it is validation you want from those around you, that is all anybody wants and sadly people rarely get it. Self validation though is always available and in a way even more powerful.

I know very little about the gender topic, however at some point I assume you must have self validated that, then do the same with the ASD (even if not offcially diagnosed) and I think it may lead you out of the maze.

Best of luck.

 

[Suzette]

Originally I was thinking of dropping the autism idea entirely and moving on (I don't want to waste hope and energy if the chances are very low), but I'm starting to think it might still be worth it to keep pursuing the possibility, or at least thinking about my problems through that lens until I find a better explanation.

I really appreciate everyone's responses, you've all given me things to think about. This thread was more useful and hopeful than I thought it would be.

I do not think you should "give up" on the idea you are on the spectrum. This is a complex subject and while there are a lot of check lists to compare yourself to, each answer is an essay and not multiple choice.

 

[Martha Ferris]

I agree that you may be comparing yourself to the traits of a male whereas those of a female are different plus we are all different in our traits that is why it is called "on the spectrum." I suggest that you delve deeper into being a female on the spectrum. There are many videos of females on the spectrum on Youtube as well as other sites that address this concern.
Early on I was comparing myself to those traits exhibited by males on the spectrum and was sure that I was not despite having two brothers and at least two nephews on it. But why did it affect only the males in our familiy? My discovering how females present differently than males was a game changer for me. I know that I am on the spectrum now even without a diagnosis. Further women are often undiagnosed, under diagnosed and even misdiagnosed and thus given treatments that are not appropriate as a result.

 

[Suzette]

Regarding how obvious autisim is as toddlers or small childeren , watch this video.

The signs will be obvious to many on this board but to a parent who does not know what to look for these signs might be missed.