Did anyone ever question their autism diagnoses and thought they had a undiscovered condition?

[Kit]

I have been told since I was 15 by my mom I was not a real aspie and I was not autistic and we only got the diagnoses to get me through school. She also said it came and went and she also said it was the closest diagnoses for me.

So then on I thought I had a disorder that is not described yet and was convinced if my psychiatrist saw more patients like me, he would have given it a name and described it and I would have been the first to be diagnosed with it.

Plus I have realized how damaging it is to bash and stereotype NTs and how the autisms supremacy also affects people on the spectrum as well. And because of it, I thought my mom is right, I am not a real aspie because I am not logical, I suck at math, I am too emotional, I must be too NT to be aspie. I just felt like I was in between two worlds. Too aspie to be NT and too NT to be aspie. I felt like a fraud. I am so glad we have moved away from the autism supremacy and the NT bashing as well. It was very bad On Wrongplanet ten years ago and even in the early 2010s, it was still there. I had even stopped attending autism groups because I felt my diagnoses was fraudulent and it was only given to cheat the system and I should have just been abandoned in the school system. Plus it didn't help when I was reading online how autism is over diagnosed and it's being handed out like candy and being given to kids who don't have it just so they can get services. It made me think "was this me as well because we didn't have the no child left behind act back then?" Then I read The Difficult Child and it made me wonder "is this me, what if this was me and I only got diagnosed because of my school?" The doctor who wrote that book does not think that every child with problems has a disorder. He also thinks you can have social issues and be eccentric and be sensitive and not have AS.

So has anyone ever felt this way as well about themselves?

I used to talk about it a lot on Wrongplanet and discovered it made some users there uncomfortable and made me the "bully" all because I was talking about myself there and it made them upset. I guess I was making them think "if that is what happened to League Girl, how do I know that isn't what my doctor did? What if he just gave me the diagnoses because he thought I wanted it?" So I would say their anger was misplaced so it was easier to blame me than giving me support. I felt I couldn't even talk about my diagnoses without offending anyone and I felt invisible and that I don't exist. I was even questioning all my symptoms and thinking if these are just quirks and thinking "well I don't think they give me an impairment so I guess they are not symptoms." Well my mom said I only have symptoms when I am a stressed and I am not stressed so this must not have been a symptom here, I must be suffering from something else that hasn't been discovered yet." I did have one mod there tell me a few years back that my mom is a jerk for saying all this to me and she was gaslighting me. That is the only support I had gotten there from someone about my diagnoses.

 

[Tom]

I briefly considered the possibility of being a lunatic, since for a while my 'phases' seemed to be in coincidence with the lunar cycle. But I came to think it was only a temporary coincidence. I almost never have them now, possibly due to meds, age, or perhaps I was put on the inactive list by the Supreme Werewolf. I still don't know if they are/were related to autism or a co-morbid.

 

[Magna]

Kit: Thankfully Autism Forums here is not Wrong Planet, so the issues you might have faced on that other forum could certainly be more specific to that forum rather than apply to any/all autism forums. I don't recall ever seeing any "autism supremacy" here.

There are autistic people that are proud to be autistic. There are people from different cultures that are proud to be of/from their specific culture, country, etc. "Gay pride" is another example. An idea that in any of those examples pride in something is automatically supremacy would be silly and just plain wrong.

Autistic people can certainly be proud to be autistic and respectful of NTs at the same time without having any envy of or deference to NTs. Remember, many autistic people have been bullied and even abused by NTs throughout their lives, so that's a very real factor as well.

Your issue seems like it troubles you a great deal. Even though it might be at a financial cost, perhaps you might consider going for an assessment as an adult. Certainly an outcome could be that an autism therapist/assessor would find based on their professional experience and the process that you were misdiagnosed. That might bring you peace of mind.

Thoughts?

 

[Suzette]

With respect, I think your mother was offering an explaination because she never found a way to feel better about your diagnosis. Then (the 90s and early 2000s) there was a lot of misinformation regarding the causes of autisim flying around. You mother may have been feeling guilt because of the misinformation.

Just consider this: Why did you need help in school? And why do you think "only showing symptoms" when you are stressed automatically invalidates an autsim diagnosis?

My son has a twisted foot but he only limps when he is tired. Not limping does not make his foot straight. Autistic traights are much the same. You exhibit more readily when you are tired because masking all of the time is hard work. Masking may make it appear you are nt, and that is the point of masking. But masking effectively does not mean you are not autistic.

 

[Gerontius]

View attachment 71939

I briefly considered the possibility of being a lunatic, since for a while my 'phases' seemed to be in coincidence with the lunar cycle. But I came to think it was only a temporary coincidence. I almost never have them now, possibly due to meds, age, or perhaps I was put on the inactive list by the Supreme Werewolf. I still don't know if they are/were related to autism or a co-morbid.

My father & I share the same affinity for full moon nights, and I also firmly believe that the autism runs on his side of the family which made me the (crazy) man I am today. People are sensitive to the moon but don't often realize it.

 

[Suzette]

Try this video on for size

 

[Fino]

I quite see how that makes sense. The purpose of a diagnosis is for a person to receive the proper treatment/services. If a person needs autism services to get through school, then that sounds like they're autistic to me. Your mom likely insists you're not because she feels it would reflect badly on her if you were. That's very common. And none of the reasons you gave for being NT were valid.

 

[Kit]

Kit: Thankfully Autism Forums here is not Wrong Planet, so the issues you might have faced on that other forum could certainly be more specific to that forum rather than apply to any/all autism forums. I don't recall ever seeing any "autism supremacy" here.

There are autistic people that are proud to be autistic. There are people from different cultures that are proud to be of/from their specific culture, country, etc. "Gay pride" is another example. An idea that in any of those examples pride in something is automatically supremacy would be silly and just plain wrong.

Autistic people can certainly be proud to be autistic and respectful of NTs at the same time without having any envy of or deference to NTs. Remember, many autistic people have been bullied and even abused by NTs throughout their lives, so that's a very real factor as well.

Your issue seems like it troubles you a great deal. Even though it might be at a financial cost, perhaps you might consider going for an assessment as an adult. Certainly an outcome could be that an autism therapist/assessor would find based on their professional experience and the process that you were misdiagnosed. That might bring you peace of mind.

Thoughts?

Had been on the autism community since 2003 and there was always NT bashing and aspies being more superior than NTs and how being autistic is better than being NT and how dumb and stupid NTs are and how mean they are. Even I fell into this trap as well and thought bullying was NT behavior and being judgmental was NT behavior. This was autism supremacy I was sucked into. Plus I can remember how autistic users used to go accusing other users of not being autistic because of their views and opinions.

But now in the 2010s it has died down and now autism supremacy and NT bashing is frowned upon now and even WP has moved on from it. It became decided by the new staff that NT bashing falls under the rules of WP and that it's an attack on WP members because they had NT users there. Even Aspiesforfreedom banned NT bashing too and made it a bannable offense.

I am sure if NT bashing were to happen here as well and the autism supremacy talk like how it's a super power and not a disability and it's better than being NT, I am sure this would be called out and shot down.

To find this stuff now, you would have to go to Tumblr or Twitter or to private aspie facebook groups.

 

[Kit]

I quite see how that makes sense. The purpose of a diagnosis is for a person to receive the proper treatment/services. If a person needs autism services to get through school, then that sounds like they're autistic to me. Your mom likely insists you're not because she feels it would reflect badly on her if you were. That's very common. And none of the reasons you gave for being NT were valid.

Apparently my mom feels that autism is a death sentence and it means you won't be independent and it's a bad stigma. This is common thinking among autism moms who grieve over their child when given that diagnoses and my mom only rejected it so she had to prove I was not autistic so she worked hard with me growing up so I wouldn't be autistic. She has even expressed to me since my teens how I would have been autistic if she and my dad had listened to everyone. To me she seemed to be implying that autism is created than something you are born with. She even told me not too long ago that she never let anyone put that label on me and then they were going to say I have an autism spectrum disorder and my mom refused that because of the label. So I guess that explains why my psychiatrist told her "This is the best I can do for your daughter and the closest you can ever get to for a diagnoses, use this diagnoses to get her through school and to give her the education she needs."

I honestly do not think she would have taken the diagnoses if it were not for the situation we were in. Instead it may have been "oh they tried to say you had Asperger's and I wouldn't allow them to put that label on you because you don't have it. Then everyone would have expected you to be a genius and be a doctor or something because they're brilliant." Yes she actually told me this too about what a real aspie is. She said they tend to be lawyers or doctors and they're brilliant so she has a hard time seeing me as an aspie and saying I have it.

Autism stereotypes also affect NTs as well. I do wish she would change her feelings about it and understand the term of autism has changed and she needs to get rid of her old fangled views on autism she grew up with and understand that attitudes about kids with disabilities were different than they are now.

Also it sounded like my mom wasn't treated well when she wanted me to be independent and learn to talk and wanted me to get married and live on my own and go to college and she was treated like she was insane for even having this goal for me. She said it was so traumatizing for her so autism felt like a death sentence.

I have thought over the years, if I am not a real aspie, does that mean someone isn't a real Bipolar if their symptoms also come and go and if they only flare up when they miss a dose or need their pills adjusted? Does a schizophrenic no longer have schizophrenia if it's gone when they are on medication? By my mom's logic, I guess they are nor real Bipolar and real Schizophrenic. What about my husband's seizures, they also come and go, does that mean he isn't real seizures? They are triggered by his pain and anxiety but with anti anxiety pills he is on, he doesn't have them. Does that mean he doesn't have true seizures? This is my mom's logic about my diagnoses.

 

[Luca]

One of the reasons I’ve been hesitant to post here lately is that my current therapist has suspicions that I am probably not really autistic. She thinks Aspergers may have been a misdiagnosis because I was too young at the time to be diagnosed with some of the mental illnesses that I’ve been diagnosed with now and that was the easiest thing to label it as in the early 2000s.

 

[Progster]

Autism stereotypes also affect NTs as well. I do wish she would change her feelings about it and understand the term of autism has changed and she needs to get rid of her old fangled views on autism she grew up with and understand that attitudes about kids with disabilities were different than they are now.

Yes, it sounds like your mum is only listening to stereotypes and not looking at you as a person. People with autism, or of any other type of neurodiversity, are not all clones - not all maths geniuses, not all emotionless Mr Spocks. She needs to see you for yourself, the unique person that you are.

 

[Magna]

Had been on the autism community since 2003 and there was always NT bashing and aspies being more superior than NTs and how being autistic is better than being NT and how dumb and stupid NTs are and how mean they are. Even I fell into this trap as well and thought bullying was NT behavior and being judgmental was NT behavior. This was autism supremacy I was sucked into. Plus I can remember how autistic users used to go accusing other users of not being autistic because of their views and opinions.

But now in the 2010s it has died down and now autism supremacy and NT bashing is frowned upon now and even WP has moved on from it. It became decided by the new staff that NT bashing falls under the rules of WP and that it's an attack on WP members because they had NT users there. Even Aspiesforfreedom banned NT bashing too and made it a bannable offense.

I am sure if NT bashing were to happen here as well and the autism supremacy talk like how it's a super power and not a disability and it's better than being NT, I am sure this would be called out and shot down.

To find this stuff now, you would have to go to Tumblr or Twitter or to private aspie facebook groups.

It's good to hear that there have been changes compared to how you say things were. Just as long as those rules don't stifle an autistic person's ability to share their own experiences. It's not even open for debate that autistic people have suffered bullying and abuse by NT's in their lives. If such an autistic person on an autistic support forum was prevented from sharing their experience because doing so would be considered "NT bashing" or it would somehow hurt the feelings of a few NTs which frequent an autism support forum...wrong. Wrong in the same way it would be wrong on a woman's support forum to stifle a woman who was sexually abused by a man from saying she had trust issues with men, was suspect of them, etc. as a result of her abuse.

 

[Kit]

It's good to hear that there have been changes compared to how you say things were. Just as long as those rules don't stifle an autistic person's ability to share their own experiences. It's not even open for debate that autistic people have suffered bullying and abuse by NT's in their lives. If such an autistic person on an autistic support forum was prevented from sharing their experience because doing so would be considered "NT bashing" or it would somehow hurt the feelings of a few NTs which frequent an autism support forum...wrong. Wrong in the same way it would be wrong on a woman's support forum to stifle a woman who was sexually abused by a man from saying she had trust issues with men, was suspect of them, etc. as a result of her abuse.

The treatment I have gotten from other NTs I have gotten from other people on the spectrum as well and this is what also made me realize how dumb NT bashing is. I realized lot of NT bashing people on the spectrum would do is human behavior in general. We are not immune to be bullies or judgmental or being intolorant, etc.

 

[Magna]

The treatment I have gotten from other NTs I have gotten from other people on the spectrum as well and this is what also made me realize how dumb NT bashing is. I realized lot of NT bashing people on the spectrum would do is human behavior in general. We are not immune to be bullies or judgmental or being intolorant, etc.

Understood. I hope you understand though that my point in this thread you started is that if an autistic person has experiences in their own life in which they suffered bullying or abuse by an NT or by NTs and shares that, works through that or asks for support for that on an autism support site that that in and of itself isn't "autism supremacy" and shouldn't be labeled as such, stifled, etc. Preventing autistic people on an autism support site from sharing their experiences and feelings that might include experiences involving NTs would be ableism and could even be argued, NT supremacy cloaked in "inclusivity".

Would a man likely be uncomfortable with things said about men on a support forum for abused women? I would expect it. Should such a forum prohibit any such uncomfortable talk about men because a few men might frequent an online support forum for abused women and they might have their feelings hurt?

 

[Kit]

There is a difference between talking about abuse and saying "all men are rapists and abusers." And as a woman, that talk would bother me too but it's not as bad as racism is and misogyny. Same as NT bashing isn't as bad as racism and ableism. It's because NT bashing has also harmed people on the spectrum as well which is why lot of autism communities have moved on from it. For example if you have been mistreated at work, talk about being mistreated at work without blaming it on NTs but blame it on the people who judged you.

 

[Magna]

There is a difference between talking about abuse and saying "all men are rapists and abusers." And as a woman, that talk would bother me too but it's not as bad as racism is and misogyny. Same as NT bashing isn't as bad as racism and ableism. It's because NT bashing has also harmed people on the spectrum as well which is why lot of autism communities have moved on from it. For example if you have been mistreated at work, talk about being mistreated at work without blaming it on NTs but blame it on the people who judged you.

I agree with that you're saying; that there's a difference between talking about abuse rather than saying "all" of any type of person is bad, etc.

If an autistic person talks about their abuse and than says something like: "In part, as a result of the abuse and bullying I suffered at the hands of NTs throughout my life, my preference is to seek out autistic or ND friends.", that's not NT bashing.

 

[Sarah S]

I have searched most of my life (still do) for more of the multiple diagnosis yet to find (Thats been stated from the docs etc... In my medical journals) as i have also searched for why i am as i am and have all the problems i have had since birth & it's actually now in my 50 ´s i finally starting to get many of the missing puzzle pieces in my life. (and it was when i came in here i finally started to learn all about all my diagnosis & also learnt a lot and still do just being in here talking to you all

So, it's not at all that strange that some of us doubt our own diagnosis i believe.

Same with doubting myself with even my diagnosed diagnosis (incl ASD witch i still doubted when i came in here as i shore didn't fit the " profile " of a ASD 3 & like many of you dear friends in here told me you can't compare you're self to others as all NP diagnosis is highly individual not to mention we have levels , gender, being able to learn to adapt to said diagnosis etc....

& i have opposite of yourself been labeled, Judged, and treated as a retard from birth Kit & NOONE (except my mom) believed i would amount to anything (it's even in my medical journals from when i got my ID diagnose) & they were ALL wrong and i earnt their respect eventually.

 

[Aspychata]

My mom refuses to believe l suffer from it. I think she has it also. It's the stigma attached to it. Alot of me didn't develop well until many years later. So went thru life somewhat handicapped in my skills and poor choices but by 30's , l felt on top of my game.

Guess you need to not judge your mom,but step back from her. She decided certain choices for you based on knowledge and societal constraints and even economical limitations. Could she have done it differently, more testing? Maybe not, maybe put this bad boy to bed and not judge her?