Story I did my autism assessment and it came as not autistic

[deaddovedonoteat]

Hello. I started my journey of self discovering I might could be autistic one year and a half to two years ago. I had no idea this was a possibility before.
I started doing so many researches and seeing content of autistic women in general and I finally after so long feeling like no belonging in my life, did it. I felt like there was finally something that explained why I felt what I felt and why I was how I was.
Last month I was finally able to pay for a neuro evaluation, as asked by my psychiatrist.

It took 6 sessions and a lot of tests and questionnaires. They talk to some of my family members.

The results are: I have "autistic traits" that were developed by my early depression, anxiety and OCD, and I must do occupational therapy or Behavioral Cognitive Therapy to "work through this traits".

My Evaluator said she couldn't nt close a diagnostics of Autism Spectrum on me for some reasons. 1 - although all my report was full of autism signs, my mother's and brother's were totally different and indicate no autism.

2 - "Finally, the existence of stereotypical behaviors (?) inflexible adherence to long-standing routines (lie) highly limited and fixed interests in childhood(lie) or clear impairments in verbal and nonverbal communication throughout the developmental period were not reported."

3- The complaints reported by (my name) may indicate traits related to ASD (such as sensory hyper-reactivity, difficulty in social interaction, compensatory mechanisms, etc.), however, are insufficient for diagnostic support.

She also used arguments like "people with autism usually aren't bothered by changes of weather but you are" and "you are too empathetic for that".

Im completely destroyed. I felt like I finally found my place in the word, I had names for the things I felt, I belonged… and suddenly, no.

It is just depression, anxiety and OCD (oh to mention I have been treating this for 10+ years and they haven't vent gone away but what can I say I am not the professional)

These past few days have been hell for me since Im completely lost, I don't know what to do, I don't nt have motivation for nothing.

I wanted to know what you guys think about it. If I am being over dramatic and I should just stop complaining and accept the professionals diagnosis, or anything, really. I feel completely lost and disconnected and since that happened Ive been non verbal most part of the time, its been really hard to communicate and to identify my needs in this period of hardship, Im feeling tired, bothered and really exhausted.

Thank you for reading that. I can give any information if anyone wants to know something more about it, just ask.

If there are any autistic AFAB there that can help me with it I would really appreciate <3

 

[edu0z]

The brain can be a hypochondriac bitch that sometimes creates any symptom just to satisfy that need we have to feel like we belong somewhere. That's why the culture that exists today of "embracing mental health" and all those things does more harm than help.

 

[Tegan_sky]

I've seen quite a few people say they have "self identified" as autistic. I would not discount them or tell them they are wrong. If you feel a commonality with autistics, if it has given you comfort, don't let this assessment of "not autistic" ruin the supportive feelings you found within the autism identification you have. I know for sure I am "neurodivergent," my brain just works differently. Autistics are neurodivergent too, as are people with ADHD. I have taken numerous online assessments for autism, at the least the results come back saying I have "traits" of autism. A couple of more said I was somewhere "on the spectrum."

I rambled there, sorry. But I implore you to not let this neurologist's diagnosis of "no," take away from you, something you identify with so much and that has given you comfort.

 

[deaddovedonoteat]

I've seen quite a few people say they have "self identified" as autistic. I would not discount them or tell them they are wrong. If you feel a commonality with autistics, if it has given you comfort, don't let this assessment of "not autistic" ruin the supportive feelings you found within the autism identification you have. I know for sure I am "neurodivergent," my brain just works differently. Autistics are neurodivergent too, as are people with ADHD. I have taken numerous online assessments for autism, at the least the results come back saying I have "traits" of autism. A couple of more said I was somewhere "on the spectrum."

I rambled there, sorry. But I implore you to not let this neurologist's diagnosis of "no," take away from you, something you identify with so much and that has given you comfort.

Thank you so much for the words

 

[Groundhog_Day]

I thought I might be autistic, but found out I have avpd. There is a helpful diagram on Google images that shows the overlap between avpd and high masking autism. I have every avpd trait, but not all the autistic traits.

Don't know if this helps you, but the diagram is the 2nd image on Google search for avpd.

 

[deaddovedonoteat]

I thought I might be autistic, but found out I have avpd. There is a helpful diagram on Google images that shows the overlap between avpd and high masking autism. I have every avpd trait, but not all the autistic traits.

Don't know if this helps you, but the diagram is the 2nd image on Google search for avpd.

Thank you a lot! i will look it up!!

 

[therenexuefrbue]

a bit of context before I start: my brother has an autism diagnosis, and I highly suspect many others in my family (including myself) are nd or somewhere on the spectrum. one of my closest friends also got an autism diagnosis after previously failing an adhd diagnosis.

with both of these things in mind:
1. the diagnostic capability of medical institutions is very poor in a lot of mental health cases. I assume you're in the US since you had to pay, and I imagine it's no better there than it is in the UK. for starters, neurodivergency is still not particularly well-understood, and the diagnostic criteria can exclude people who have enough traits to affect their life but not enough to pass the threshold. it's a pain, and it's often quite arbitrary. there is a possibility that your diagnosis is incorrect, but there is also a possibility that it is correct, which leads me to-
2. it is very possible that your experiences would fit into some other diagnostic category. in the case of my friend, they went to therapy with someone who specialised in adhd and she said that it was likely based on their traits, but they didn't pass the formal screening test. about a year later, they were diagnosed with autism instead. this could be a similar situation.
3. diagnoses rely heavily on the testimony of those surrounding you. this testimony can be biased for a number of reasons, and can thus be unreliable.

that's all to say - if things which are meant to help autistic and neurodivergent people help you get through the day easier, use them as much as you can. the diagnosis may be correct, it may not. psychology is a bitch.

if you can afford it, try a different therapist (preferably one who specialises in neurodivergency) and go from there. again, if you can afford it, it is probably worth seeking a second opinion on the diagnosis, as some of the things you mentioned the evaluator said seem a tad strange.

whatever happens, I wish you luck and I hope you manage to find some more concrete answers down the line

take care :)

- theren

 

[deaddovedonoteat]

Thank you so so much for sharing this and for the advices. Although im not in the us or in the uk, I have to pay anyway which sucks. I will probably look out for other professional.
I thought this one was specialized but she said some things that gave me an not up to date understanding vibe, if that makes sense.

Anyway, thank you again and I also wish you luck in life! That was very sweet!

 

[kermudgeon]

Hey :)

I don't think you should give up after one doc says you aren't autistic (unless the mental strain is too much to deal with, of course) because autistic people are all very different and a lot of us, especially afab folks, learn to mask incredibly well. That's part of why just living is so hard- because masking is f*cking terrible. (Seriously, if I could go the rest of my life without having to fix my face or tone of voice, and all I would have to do was never see another person ever? Sign me up).

If you haven't already taken the raads self-test, try that one. It's a reliable test that has been shown to be accurate in gauging autism.

Good luck to you

 

[dragonofenvy]

and "you are too empathetic for that".

That's very strange because I have ASD yet I've often found that I am more empathetic towards others than anybody else I know. Bear in mind my "empathy" is at a cognitive level and less so on an emotional level, although they do intermix (if that makes any sense at all). Basically: autistic people have empathy, some have very little, and some have way too much. I can try to explain this a bit more if you want but the whole idea of autistic people having no empathy is blatantly, provably false and I really hate it when people, especially in the case of professionals think in that way. Maybe for some empathy is problematic, but I think for high-functioning autistics like me it does develop, even if it's more of an IQ level thing than an EQ level. If you choose to continue tests I'd see a different person.

clear impairments in verbal and nonverbal communication throughout the developmental period were not reported.

To get an ASD diagnosis this is the single most important thing. If you don't have developmental delays, some kind of impairment, and/or an above-average or below-average IQ (IQ isn't important, but it is a small sign) then chances are it's something else. As far as I know, every ASD diagnosis requires some kind of developmental impairment or delay.

Now, my question is - why do you want to be autistic? What does having a label placed on you do for you?
If you can't answer that question, then I really think you should avoid having this be part of your identity. I've had this be part of my identity in the past and realized later in my teens that it really just doesn't matter and is in fact, a negative when you bring it up to people. You should identify with who you are, not what. Identifying with what you are is just going to cause problems.

If you haven't already taken the raads self-test, try that one. It's a reliable test that has been shown to be accurate in gauging autism.

Self-assessments aren't as reliable as ones done by professionals but I'd say it's an okay starting point, just don't take the results seriously. I took it and scored a 65 which is the minimum in which autism is considered, which I suppose makes sense since I was diagnosed with Asperger's back before it was put into the ASD umbrella. If you do manage to score high I still wouldn't use it as "oh hey this test says I'm autistic so I must be." It should be used to explore it more but not self-diagnose. Again though, if you take it and score high, I ask - what does having the label do for you? Overall I thought the test was pretty good.

 

[kermudgeon]

Self-assessments aren't as reliable as ones done by professionals but I'd say it's an okay starting point, just don't take the results seriously. I took it and scored a 65 which is the minimum in which autism is considered, which I suppose makes sense since I was diagnosed with Asperger's back before it was put into the ASD umbrella. If you do manage to score high I still wouldn't use it as "oh hey this test says I'm autistic so I must be." It should be used to explore it more but not self-diagnose. Again though, if you take it and score high, I ask - what does having the label do for you? Overall I thought the test was pretty good.

I understand what you are saying, but it was psychologists, not just me, a rando, saying that the raads test specifically is accurate.

But yeah, if I'd known you only got a 65 I wouldn't have said that... sorry

I understand what you are saying, but it was psychologists, not just me, a rando, saying that the raads test specifically is accurate.

But yeah, if I'd known you only got a 65 I wouldn't have said that... sorry

Oh sorry for my lack of reading comprehension- you aren't the op

 

[sserafim]

I'm AFAB and I was diagnosed with Asperger's (autism level 1) and ADHD. Maybe you don't have ASD and instead have some other similar disorder, like AvPD or SPD (schizoid). Here's the diagnostic criteria for ASD if you're wondering/curious: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html. If you're certain that you have ASD, maybe go to a different examiner?

 

[Sugarplum]

Sorry I don't have the energy to write a full reply.

I've run a social group for autistic adults for the last decade and have worked in autistic and neurodivergent advocacy. I have seen and experienced so much ignorance and incompetence in diagnosticians. They often are working based on stereotypes not the actual criteria, and can have a lot of prejudice. Also your family's view is totally biased and really could mean nothing.

There's a great group on Facebook (I use FB mostly for support groups and cute animal groups, I know it can be bad for some people's mental health but you can use a fake name and curate it so it's not so bad). It's called Ask me, I'm Autistic (24 hours rule). You can ask questions and search and read other people's questions, and it's very neurodivergent friendly and supportive and puts autistic voices first.

There's lots of other groups too. I think finding peers can be more helpful than one single (expensive) evaluation where the evaluator may be biased and not competent.

 

[Blurry_Buildings]

I was diagnosed with ASD at a very young age. ASD isn't a specific disease, it's a set of symptoms that can be expressed on a very wide spectrum, and it can have any number of different causes that aren't understood well.

If I wanted to today I could probably find a psychologist who knew nothing about me and convince them that I had no mental disorder by just acting stereotypically normal. Like how people who want to die can hide it, an outward appearance doesn't necessarily mean that something isn't there.

Autism as it exists within the medical profession is just a label, and the people in charge of labeling you usually barely know you. It's designed to make some medical professional's life slightly easier when processing your paperwork based off of a 30 minute evaluation and one doctor's subjective opinions about the conversation. No brain scans, no cool genome sequencing, no physical abnormality that can be traced, just you and some overpaid loser with a copy of DSM-5. It isn't something that, with current medical technology, usually has a way to be objectively proven, especially by other people who don't know what happens in your mind.

If you know you have the symptoms of Autism, and that understanding and coping with those symptoms will be helpful towards your personal devlopment, then there is no reason to not believe you have Autism.

For me personally, it screws everything up and I've beaten myself up endlessly trying to be normal, but no matter how hard I try I can't make it go away. It's easy to fall into the trap of nihilism and blaming every action or bad decision on Autism and conversely it's easy to burn yourself out trying everything possible to conform to something that you will never be.

Being able to acknowledge that you are who you are while still furthering to better yourself is much more difficult than what anyone makes it seem like, especially when you have Autism. For me at least the path to personal development and where I want to be in life is grueling and filled with seemingly catastropphic amounts of uncertainty. I'll take whatever support, labels, and friends I can find along the way, and you should too.

 

[OakBuyer]

Many autism symptoms overlap with those of the schizophrenia spectrum or personality disorders.

Personally I chose to get assessed for autism (because I could relate to a lot of the autism symptoms), but it turns out I have a schizoid-schizotypal thing going on, according to my psychologist.

I'm not saying that you have it, I'm saying there's that possibility.

 

[Trakehner]

The first time I had an evaluation, it said I have "schizotypal personality features" as there were some signs of autism but "wasn't supported by parent feedback". The second time, I was diagnosed with Social Pragmatic Communication Disorder which I had never heard of. It seems to be the replacement for Aspergers, although I'm not convinced SPCD it is a real disorder separate from autism.

The worst part of it is that there is little to no support for this diagnosis since most people don't even know it exists.

 

[RosebyAnyName]

I'm also still waiting for my diagnosis (though my screening said "highly likely to be autistic / high potential") and this is still a fear of mine, that if I pursued a diagnosis then I'd have just wasted my money and I'd be back at square one with trying to find my place in the world because I didn't meet the criteria.

Not to be all "psychologists are full of it", nor to be all "you definitely have autism and they're just wrong", but a lot of the stuff the psychologist said doesn't sound like current best practices. I know you're not in the US or UK, but in some parts of North America the part of the test which includes reports from your family was removed from the diagnostic criteria. Also, women specifically tend to mask a lot better and in different ways, hence why they go underdiagnosed.

It's also an open secret that the standards are lower for autism diagnoses in the US, hence why you may see a lot of people online with a formal autism diagnosis that you relate to, and why they could get a formal diagnosis and you couldn't. Whether or not certain people get a diagnosis or not is also dependent on the sociocultural climate, not just you, so try not to take it too personally. If it really bothers you, you could always get a second opinion.

 

[Heartaches]

Hi, I'm currently looking for an autism diagnosis as well (I'm a trans man but was AFAB), although I had to stop the one I was doing due to scheduling issues and I'm looking for another one. I don't wanna speak from authority but I want to send you support; going to a psychiatrist for a formal evaluation is a scary, costly and tedious endeavor, I'm glad you had the opportunity. Very sorry for what happened, rest assured, your experiences and feelings are still valid regardless of results.​

She also used arguments like "people with autism usually aren't bothered by changes of weather but you are" and "you are too empathetic for that".

However, these arguments sound very weird. Firstly, sensory differences range vastly between autistic people, some may be more common than others, so why would the weather be an exception? I found this article talking about heat intolerance in kids with ASD and there are others talking about the same topic; which I'm sure happens to adults as well, but probably in a different way. Second, the statement that you can't be "too empathetic" if you're autistic sounds like a stereotype/prejudice. Empathy among autistic people varies from person to person, some may be less empathetic while others are highly empathetic, to the point they may have too much of it, in fact. These two articles talk and link to recent studies about this subject (and, if I may add my personal experience, many autistic folks I've met and interactive are very empathethic. Autistic folks shouldn't be stigmatized for being less or more empathetic, it's just what it is).

Evaluators are not infallible and could potentially bring up some of their biases. Autism is still very misunderstood, even by some professionals. Research in many regards is still needed, especially for the folks that have been excluded from the diagnosis due to reasons related to gender, race, culture, age and so forth. I've heard stories of people were misdiagnosed with other conditions (such as schizophrenia, depression, anxiety, bipolar disorder, etc.) spanning many years before they're eventually diagnosed as part of ASD. Granted, I hope it doesn't take that long for you, but there have been and still are people in a similar position as yours, not your fault.

Of course, as others have recommended and if you're able to, you could get assesed for other conditions with similar symptoms, or look for a second opinion with another doctor. But if you find that coping mechanisms and tools designed for autistic folks help you with deal your own, I think that's great. Do what's best for you.

It's completely understandable that you felt very tired from the response. Take your time, but don't put the blame on yourself. I wish you well and I hope you can find answers or some sort of closure in the near future. Take care​

 

[sserafim]

I'm AFAB and I was diagnosed with Asperger's (autism level 1) and ADHD. Maybe you don't have ASD and instead have some other similar disorder, like AvPD or SPD (schizoid). Here's the diagnostic criteria for ASD if you're wondering/curious: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html. If you're certain that you have ASD, maybe go to a different examiner?

I forgot to add that I had developmental delays, I didn't say my first word until 26 months, after I was taken to a speech language pathologist. I also had to be taken to a physical therapist for hand-eye-coordination. My mom knew something was wrong with me at an early age, but she says that the pediatrician never mentioned autism. She took me to a lot of different specialists and tried several things but none of them could get to the root of the problem. I was only diagnosed with it in high school (alongside ADHD and social anxiety).