Can I still be on the spectrum even though an ASD Professional told me I impossibly couldn’t?

[Crossbreed]

I even felt uncomfortable creating an account here because for the case that it’s 100% verifiable that I could impossibly be on the spectrum and then feel like I were just an actor who demands constant attention and spotlight

Feel free to participate here.

1. If you are autistic, but misdiagnosed, you could learn how to manage it better.
2. If you are not autistic, some of our ideas still might help you.
3. If nothing here helps you, you may decide to leave here on your own, but no one is showing you the door (because we don't know if you are autistic, or not, either).

 

[breakpoint64]

Were they asked to give feedback as to how you were from ages 2-6 years old for example?

My mom told me that I have shown language delay at the age of 3 but ended up being unsure if it wasn’t actually at the age of 2. The professional reported that the language delay happening at the age of 3 means that it lacks any evidence that I am actually on the spectrum.

When I responded by telling that my mom was unsure if it wasn’t at the age of two, I were told that I couldn’t be on the spectrum because “why didn’t your mom notice???” As she didn’t try to get me tested as a child with no luck. I were put in therapy for “suspected autism” as a child with no proper diagnosis because the professionals back then kept being incompetent and unhelpful about it.

If I didn’t also have ADHD and a history of echolalia as a child I would be less likely to still consider being potentially on the spectrum

 

[Progster]

I would try to seek out a second opinion from another clinician, if at all possible.

It is possible that clinicians make mistakes, or that they lack experience/insight, or that they have been instructed by their employer (if they have one) only to give diagnoses in very specific circumstances - they are following a rulebook and can't give the diagnosis, and then must try to justify their decision to you.

It sounds like the clinician who conducted your interview was relying very heavily on your mum's evidence, and when she did not give it, he/she did not have the confidence or experience to give the diagnosis based on your statements alone. Parents can often be in denial, and that's something every clinician should take account of. It is possible to be diagnosed without the evidence of a parent or sibling, you could use a different source such as school reports, the statement of a former teacher, or a therapist.

 

[breakpoint64]

I don’t really have any behavior reports from school and I don’t think asking teachers will be helpful for anything except maybe performance with special interests vs performance in other classes (I tried getting performance testing in high school but the school psych told me I’m too old for that)

However, my only bet is asking the therapy place I went to as a child and eventually figuring out a way to ask my siblings about how I exactly behaved as a child, only issue being that the response I would get back is ”stop reading too much online about that you don’t have ASD also haha ur like shelldor copper bazinga”

And I don’t want to ask anyone now as long as a second opinion is still in the very far future and I don’t want this topic to be rubbed under the nose ala “haha remember when you thought you had Autism???”

 

[Suzanne]

Basing on how I would feel if I was told the same thing, I can say, that I would probably not come on aspie central ever again, because in my head, I would feel a fraud, even though, clearly the opposite would apply and when I was going through the process and panicking, I was reassured that even if some so called professionals said I was not, that to ones on here, I clearly was and therefore, fully accepted. But, sadly, the brain can be cruel and although beautiful to read, I would feel unable to continue.

But that is me and how I would think and most certainly NOT saying that I think you should feel the same way. In fact, who cares if you are an nt with some traits. Afterall, there are full blown nts here and as long as they respect us, they are most welcome to join in.

If you can pull yourself up and take on vibes of positiviness, from us, go for a second opinion and if that also says you are not, then, sadly, you will have to accept it. I say: sadly, because suddenly there is the question still hovering: what is going on with me?

I really thought I would get a negative response and when, the opposite occured and confirmed that I am on the spectrum, I tell you, I felt so surreal, that for once in my life, what I suspected is a fact.

Just to reiterate. If you can, try to accept that you are still welcome here.

It is true that nts do have certain traits. My husband is an nt and is not a talkative person. He also is obsessed with something. He also is extremely tactless and says inoppropriate things a lot of the time, but he is clearly not on the spectrum.

I learnt as a child, that I could upset people with what I came out with, so have spent my life, checking myself so as to not say something inappropriate and once in a while, I fail and it stays with me for a long time.

 

[Suzanne]

Thanks, my only realistic chance to get a second opinion is in two years given that this is how long the waiting list takes for the public option before getting assessed at an autism support center.

The professional diagnoses adults otherwise they wouldn’t have done the assessment with me, but the question on whether or not I am on the spectrum was answered by whatever my mom answered and as much as I am certain that she didn’t intentionally sabotage my assessment given she couldn’t remember about everything in my childhood, it kinda didn’t help that she managed to portray child me as incredibly social during childhood what just wasn’t the reality for me.

Ahh, difficult.

My memory of childhood is very clear and together with my husband being questioned, the therapist said it was clearly evident that I am on the spectrum.

The thing with childhood, we sense we are different, but unable to put on a mask to pretend we are different. That occurs as we grow older.

 

[breakpoint64]

Basing on how I would feel if I was told the same thing, I can say, that I would probably not come on aspie central ever again, because in my head, I would feel a fraud, even though, clearly the opposite would apply and when I was going through the process and panicking, I was reassured that even if some so called professionals said I was not, that to ones on here, I clearly was and therefore, fully accepted. But, sadly, the brain can be cruel and although beautiful to read, I would feel unable to continue.

But that is me and how I would think and most certainly NOT saying that I think you should feel the same way. In fact, who cares if you are an nt with some traits. Afterall, there are full blown nts here and as long as they respect us, they are most welcome to join in.

If you can pull yourself up and take on vibes of positiviness, from us, go for a second opinion and if that also says you are not, then, sadly, you will have to accept it. I say: sadly, because suddenly there is the question still hovering: what is going on with me?

I really thought I would get a negative response and when, the opposite occured and confirmed that I am on the spectrum, I tell you, I felt so surreal, that for once in my life, what I suspected is a fact.

Just to reiterate. If you can, try to accept that you are still welcome here.

It is true that nts do have certain traits. My husband is an nt and is not a talkative person. He also is obsessed with something. He also is extremely tactless and says inoppropriate things a lot of the time, but he is clearly not on the spectrum.

I learnt as a child, that I could upset people with what I came out with, so have spent my life, checking myself so as to not say something inappropriate and once in a while, I fail and it stays with me for a long time.

Thanks, I should have made that clear in the first post that I do have ADHD, which at least reassures me that I am ND anyways, I kept looking in regards of ASD given the comorbidity and the things I have noticed in the course of my life and how people kept trying to hint potentially being on the spectrum while denying it when I asked them specifically.

I have never felt NT in my life as much as people tried to tell me that “nothing is wrong with me” before I got my ADHD diagnosis. I only managed to make people admit that I went to therapy for “suspected autism” when I kept asking them for what I went therapy for where the response used to be “every child goes to therapy”

Ahh, difficult.

My memory of childhood is very clear and together with my husband being questioned, the therapist said it was clearly evident that I am on the spectrum.

I actually remember a lot about my childhood and the way how I have acted back then, it’s just regardless how good my memory about my childhood is, it just doesn’t count as evidence as third party needs to confirm that I am indeed not making stuff up

 

[Yeshuasdaughter]

As a cancer patient, let me just tell you: DOCTORS DON'T KNOW JACK.

Every doctor will tell you something different. They are just working off of what they have read and researched.

I have found that the low level techs and medical assistants often know more about a treatment or condition than an actual doctor.

 

[Gracey]

Trust yourself.
You know yourself better than anyone else alive today.

Those memories and experiences you hold from your past aren't made up. They're very real to you.
Trust them.
Your mum didn't experience your childhood in the same way you did.

If you need that autism diagnosis to qualify for clinical support and assistance, chase a second opinion.

 

[breakpoint64]

Trust yourself.
You know yourself better than anyone else alive today.

Those memories and experiences you hold from your past aren't made up. They're very real to you.
Trust them.
Your mum didn't experience your childhood in the same way you did.

If you need that autism diagnosis to qualify for clinical support and assistance, chase a second opinion.

Yeah, it’s more that I have been told “your experiences mean nothing on if you are on the spectrum, just because you have had this and that experience doesn’t mean you are autistic”

Which my brain internalizes as “you are making everything up”

That’s what makes it hard for me to accept something like “your experiences are valid and you have to trust them” while being told by a professional that they are the exact opposite and say nothing

 

[Streetwise]

Yeah, it’s more that I have been told “your experiences mean nothing on if you are on the spectrum, just because you have had this and that experience doesn’t mean you are autistic”

Which my brain internalizes as “you are making everything up”

That’s what makes it hard for me to accept something like “your experiences are valid and you have to trust them” while being told by a professional that they are the exact opposite and say nothing

Neurologists have no idea how exactly every process in the brain works ,psychiatrists concentrate on prescribing drugs ,so it's going to be harder to get a diagnosis, when a percentage of diagnosing therapists are glorified drug pushers,I until the day a gp said Autism had never had it mentioned I was standing in the examining room rocking from side to side and also in the surgery apparently I'd suddenly become high functioning at 45 years of age!!!!! but that science for you !!!supposedly more worthy of respect than faiths (sometimes inferred or used in an insulting tone as religion)

 

[Pats]

I guess with all your responses, you might realize how welcome you are here with or without a professional diagnosis. Doctors are not always right, they are fallible. If I had listened to a doctor when my daughter was two and just brought her back in a couple days, she would have been dead within that 48 hours. Instead I went to the e.r. at a childrens hospital and she was in complete renal failure. Doctors are human, and as humans, they, too, can be biased by their own opinions.
I've said it so many times, but only you know how you feel inside. For instance, when I say I can't stand to hear certain types of music, the other person thinks, ok, you don't like it. What I'm saying is it it actual torture when I hear it. Or when I talk about being unable to do ANYTHING in front of someone, they think typical stage fright. No - it's freezing, it's severe, it's not the little bit of anxiety they experience before speaking in front of a group. I told a doctor once that I didn't have friends and didn't know how to make friends and his response was that sometimes people just don't click. So my 62 years of not being able to make friends is because I've just never met someone I clicked with??? No, that's not it.
The fact that your parents suspected it when you were a child should say something. Of course, when I was a child there was no autism spectrum. The fact that I didn't talk until second grade when they finally sent me to speech therapist upon recommendation of the school probably, didn't say a thing to my parents.
When I did get a diagnosis I was 59, and 1 of my daughters and 1 of my sons is undoubtedly also on the spectrum and they realize it and don't need a professional to tell them yes or no.

Anyhow - you are what you are what you are. If you feel comfortable here, please stay.

 

[breakpoint64]

I guess with all your responses, you might realize how welcome you are here with or without a professional diagnosis. Doctors are not always right, they are fallible. If I had listened to a doctor when my daughter was two and just brought her back in a couple days, she would have been dead within that 48 hours. Instead I went to the e.r. at a childrens hospital and she was in complete renal failure. Doctors are human, and as humans, they, too, can be biased by their own opinions.
I've said it so many times, but only you know how you feel inside. For instance, when I say I can't stand to hear certain types of music, the other person thinks, ok, you don't like it. What I'm saying is it it actual torture when I hear it. Or when I talk about being unable to do ANYTHING in front of someone, they think typical stage fright. No - it's freezing, it's severe, it's not the little bit of anxiety they experience before speaking in front of a group. I told a doctor once that I didn't have friends and didn't know how to make friends and his response was that sometimes people just don't click. So my 62 years of not being able to make friends is because I've just never met someone I clicked with??? No, that's not it.
The fact that your parents suspected it when you were a child should say something. Of course, when I was a child there was no autism spectrum. The fact that I didn't talk until second grade when they finally sent me to speech therapist upon recommendation of the school probably, didn't say a thing to my parents.
When I did get a diagnosis I was 59, and 1 of my daughters and 1 of my sons is undoubtedly also on the spectrum and they realize it and don't need a professional to tell them yes or no.

Anyhow - you are what you are what you are. If you feel comfortable here, please stay.

Thanks. I think an element that kinda makes it hard is that everything I have experienced was basically the fear of those who seeked for a diagnosis and ended up getting one. It didn’t help that I were also told by the professional that “well you already knew you don’t have it” when I said that it was literally the worst case scenario I’ve had in my head before even making the first appointment as in “why should I even seek a diagnosis if im going to end up paying 600€ and getting told I couldn’t be on the spectrum anyways”

Having this scenario become a reality was just the puzzle piece that just triggered the severe feelings of being fake being validated. I have felt more misunderstood than before while misunderstanding myself and still feel like I’m pushing myself for a diagnosis of something I just couldn’t have. I have become disconnected from trusting my own experience as I were told that they don’t say anything. I wasn’t offered a better explanation, I were only told that I am just socially awkward.

Even though I know that everyone I have talked to about this in real life and online is on my side and supportive of a second opinion. The fact that I went undiagnosed for both ADHD and ASD for so long because the signs I have shown were ignored by the environment I’ve grown up in and my parents not being helped with the signs I have shown.

Also your anecdote about not being able to make friends and just freezing speaks out of my mind.

It’s very clear to my main therapist that the sort of social issues I experience can’t be really described as “social anxiety” and as much as he would rather give me the diagnosis for avoidant personality disorder (since I do show strong signs for that) he would support me seeking a second opinion and explained to me that I am most likely “sub-clinically” on the spectrum, in the sense that I do show traits of ASD but not in a way that I would pass the diagnosis criteria.

(For Aspergers I would require a lack of language delay during early childhood and for atypical autism I would require an intellectual disability which aren’t the case for me)

I explained to him that being told that I could impossibly be on the spectrum despite counter evidence still took away “my place on the spectrum” and made me feel like I wasn’t allowed to talk about the experiences I have a hard time explaining with ADHD. I’m glad to read that this forum would still welcome me.

I keep telling myself that being a guy from a middle class background doesn’t excuse me not having received any diagnosis.
I keep having this thought in my head that says “so you don’t have it, why do you still care?”

I were constantly told to focus less on the label but more on the symptoms and while yes, it’s also..... not fulfilling. What if me caring too much about the label part of the symptoms??? Especially in regards of whenever someone says “Aspergers” in the context of me even though I had a language delay?


I have no realistic opportunity of receiving a diagnosis but I also feel uncomfortable self-diagnosing due to the stigma around the idea, especially after being told by someone who has a degree in psychology that I couldn’t be on the spectrum.

Then again the other person who also has a degree in psychology and is my therapist while not trained for diagnosing ASD told me that I’m most likely on the spectrum even if I’m on the very thin border of it.
As in I’m pretty much standing on the very thin line between “autistic” and “not-autistic” which kind of goes against the idea that one is either autistic or not-autistic. Then how am I supposed to be standing in between????? I can’t say I’m “a little autistic” because that would be incredibly insulting and wrong. I seem to take a lot of the language revolving discussions about ASD to the literal point of questioning the little validation I got from a therapist because my brain will interpret it as “your therapist said that you are a little autistic therefore you can’t be autistic” even though he actually meant “you are kinda in the spectrum but not as much to receive a clinical diagnosis”

What does that mean? I can’t have “Broad Autistic Phenotype” because no one in my family is diagnosed with ASD. I have ADHD, while having an overlap, I catch myself relating more to the experiences of symptoms from people who have both.

 

[Rasputin]

On the one hand I scored low on like every ASD test I were apparently tested with, but then again those were questionnaires that were filled out by the professional based on my mom’s verbal answers which made me look on paper as the most neurotypical person on the planet.

Which caused my therapist who initially pushed me to seek a diagnosis for ASD to explain me that I just don’t have a pervasive developmental disorder and I had to actively explain to him that there was so much wrong going on and it made me feel that I’m not being believed.

He explained me that most people with Aspergers don’t look like they have Aspergers and can mask themselves but here is the thing


I don’t and could impossibly have Aspergers, I had a language delay. Maybe high functioning ASD in a subclinical extend if it’s hard to diagnose to the point that I just come off as having spent too much time on WebMD even though what I have mistaken as Aspergers but actually was HFA is something I have suspected for almost a decade, but my language delay as a child means that I can’t in any way have Aspergers so I feel uncomfortable when “HFA” and “Aspergers” are interchangeably used

It sounds as though there is no validity to your diagnosis whatsoever. If your mother had reservations about your assessment, she could easily manipulate the assessment results.

 

[breakpoint64]

It sounds as though there is no validity to your diagnosis whatsoever. If your mother had reservations about your assessment, she could easily manipulate the assessment results.

My mom was rather supportive about doing the assessment (something I should probably thank Greta Thunberg for) and I doubt that she intentionally sabotaged the assessment for me as she genuinely couldn’t remember relevant parts of my childhood and was equally upset as I was when I got the results given that the questionnaires were all based on her verbal answers.

She does support me seeking a second opinion and recommended me asking for documents at the place I went to therapy as a kid since preparation is something I should have done before I spent 600€ on this. Instead I have bought into the wisdom of “just be yourself, you will do fine no worries”not being able to answer any question because I genuinely didn’t know how to turn thoughts into spoken words

 

[Rasputin]

It is understandable that you and your mother are disappointed. I hope that you get a better result the next time.

 

[breakpoint64]

Thank you all for your supportive responses, I will definitely take the opportunity to seek a second opinion when possible. As of right now I am still struggling with introspection due to the damage this assessment has done.

One part of me is VERY confident that I’m on the spectrum and it’s incredibly ridiculous to assume that I couldn’t be and this is why I still keep pushing for this, it’s just the other part in me that is telling me that I am making this all up after the experience I’ve had early this year, or to be more specific my entire life.

My biggest regret has been spending a significant amount of money just to have my experiences being invalidated by someone who thinks that they know me better than myself because they have a fancy psychology degree. It’s just upsetting.