What to do if Autism diagnosis is negative?

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Shadweller
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02 Jan 2022, 5:14 am

I recently came to understand many things that enabled me to self diagnose and self identify with being Autistic. For instance, the fact that you do not have to tick every box and have every possible characteristic, and also that it is possible to get through your childhood without Autism being picked up, (especially if your childhood was in an era before it was so widely known what Autism actually is and what it can look like, if the social demands places upon you were limited and you could cope with them, if you were well supported, and if you could "mask".) When a GP suggested to me that I may have Aspergers some 10-15 years ago, I immediately ruled it out because all of the above was not known then, or at least I did not know it.

Since I have recently discovered and understood all of the above I now strongly identify with so many of the traits and difficulties of being Autistic, and this means that I have already self diagnosed and self identified, because everything suddenly made sense to me when explained in terms of the characteristics of Autism. I have scored well into "full blown Aspie" on some self diagnosis on line tests, but have been around the borderline on some others.

I am on the waiting list for a formal diagnosis. I have to ask the question since it's only sensible to prepare for both outcomes. At this stage I'm not sure what I would do if the assessment came back as negative, because the whole 'Autism as an explanation of my difficulties in life' fits perfectly, and nothing else ever really came close. I wouldn't like that to be taken away from me, because it may just mean that I am some kind of unspecified failure at many aspects of life, all for no apparent reason.

Is any one else going through similar, or already been through it? How are you coping, or how did you cope? Did you refuse to accept a negative diagnosis or were you able to accept it and learn how to adjust to it?



autisticelders
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02 Jan 2022, 6:34 am

It is a common enough happening that it is wise to be prepared. You still have options, and must remember you are paying for just one person's opinion.
There are no "positive" or "negative" tests we can give to prove we are autistic. There is no blood test, no genetic test, no special "look"
Diagnosis comes down the the knowledge and experience of the professional doing the assessment. If you are told you are autistic, you are generally given reasons. If you are given a negative answer I would also ask for reasons (and ask for it in writing).

I was given a lot of tests by a neuro psychologist who later told me I was not autistic. Turns out he had never diagnosed a single autistic although he performed neurological tests on 300 or more persons a year for the past 45 years, and had 800 people in his care. He simply did not keep up with the science of autism.

I was able to use that devastating experience when I sought assessment from a psychologist whose specialty was autism and who told me personally that he had diagnosed many adults with autism. He used showed me on those neurological test results exactly how they proved my autism due to the extreme nature of the performance results with very low scores in some areas and super high scores in others.

Even a negative diagnosis may be useful. It is up to you to decide if you want to keep looking for diagnosis, but even a negative experience might offer some insights or suggest new approaches to try. Keep us posted.


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kraftiekortie
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02 Jan 2022, 8:06 am

Whether you’re autistic or not doesn’t define you as a person.

You don’t have to have a diagnosis of autism to be a member of WP.



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02 Jan 2022, 10:26 am

I thought mine would be negative, so on the questionnaires I simply played it up a little. Even when I did that, my scores were still lower than the ones my mom gave me, so I was never detected as faking.
Just do what you need to do. It turns out that it was kind of in my power to determine my results, because according to the cognitive tests, I was average in every way (seriously, all of them were average, a few low or high average) so there was no way to really know for sure, it felt like it was all up to me.
Of course, if you feel guilty for doing something like that, then just be yourself. Even if they say you aren't autistic, you can still self identify as it. There will always be gatekeepers to everything, you just gotta have confidence in yourself and ignore them.



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02 Jan 2022, 10:29 am

kraftiekortie wrote:
Whether you’re autistic or not doesn’t define you as a person.

You don’t have to have a diagnosis of autism to be a member of WP.


Agreed, some people be acting like whether or not you have a diagnosis defines every personality trait you have or will have. I hate those "I hate all non-autistic people" and "all neurotypicals be like" posts. Luckily, those seem to be much more abundant on places other than wrong planet.



SharonB
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02 Jan 2022, 1:05 pm

If your Autism diagnosis is negative, go to a different evaluator or accept your Autism is not apparent to some, even alleged professionals, or re-evaluate yourself. :wink:

I think Autism is apparent in times of stress. If you've created a relatively stress-free life for yourself (like my BFF) - be aware of how you have done that (and what you avoid, or what happens when you can't). If you are stress puppy (like me), well then your cards will be on the table face up and any decent evaluator will see.

I am the highly sensitive type and push myself to my limits so my Autism is apparent (higher stress level = higher outward manifestation of traits). To my surprise (at the time) I was easily diagnosed (in my late 40s) by an evaluator experienced with Autistic adult women. Ironically I "failed" the ADOS-2, which said I was not Autistic by 1 point. I've got skills now! I can pass (but not really).

On the other hand my BFF is the "insensitive" type and keeps well within her limits. Without stress her Autism is not as apparent (to her or others). We have been calling out all the things she avoids/does in order to maintain her facade and her traits that show in any case (to me) or the few times she has been stressed. She can better "see" herself how and present her "story". Still I wonder how her evaluation will go. She's "shopping" around for an evaluator now.

It definitely depends on the evaluator. My daughter was recently diagnosed with everything except for Autism. I was told "congratulations, your daughter is not Autistic" and it gutted me. I really struggled. I re-evaluated and decided --- she is Autistic and I need to find a more qualified evaluator. Basically, I accommodate my daughter so well that, like my BFF, she has less stress. However, as my daughter approaches adolescence there is more stress and her ASD traits (that I saw all along) are becoming more apparent. So much for early intervention even in this day and age.

So it seems that some evaluators look at a person's immediate stress level to determine if they are Autistic --- so it's important for those who are not as stressed to address that. This is so for children in supportive environments and for adults in self-controlled environments or who have learned to compensate and accommodate their limitations.

Good luck!!



Haverish
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02 Jan 2022, 2:47 pm

I'm going through the exact same thing right now while waiting to be scheduled for a test. I'll let you know if/when I come up with a solution here, but for now I'm in the same boat :). Luckily my therapist has an autistic son who's in his teens, so whatever ends up happening at the evaluation I know I will still have someone who understands my traits that I can talk to.



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02 Jan 2022, 4:39 pm

It is possible to have some Autistic traits but not enough to qualify for a diagnosis of having an Autism Spectrum Disorder. When I went for my assessment I knew I had some Autistic traits but I did not know whether I was almost Autistic or barely Autistic. And you might be there, too, near the entrance to the Autism Spectrum. Whether you have enough traits to get the formal diagnosis doesn't change the fact you have some Autistic traits...I guess I would think of it as having a "touch" of Autism or "very mild" Autism.

Either way you have some Autistic traits. Wanting to learn about them would seem very reasonable.

Either way you have an interest in Autism...which is a wonderful reason to keep visiting WP!

Welcome!

P.S. Some other conditions share some traits with Autism, by the way. That can be confusing. If you have one of those other conditions it might be good to know exactly what you are dealing with...hopefully your assessment would tell you this.


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Haverish
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02 Jan 2022, 5:11 pm

Double Retired wrote:
P.S. Some other conditions share some traits with Autism, by the way. That can be confusing. If you have one of those other conditions it might be good to know exactly what you are dealing with...hopefully your assessment would tell you this.

I was excited to check out that link until I realized everything there was focused on children instead of adults. You wouldn't happen to have any information on conditions that might present with autism-like traits in adults would you?



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02 Jan 2022, 9:21 pm

I think us adults are in the minority for this kind of testing. Either you're odd enough to get identified early or you are doing such a good job at muddling through that you might not get identified at all.

I was 64 when I had my Adult Autism Assessment. Parts of the assessment process were clearly designed for young children. Nonetheless, I think they were accurately assessing me—just doing so in a manner that amused me and that caused the Psychologist to seem embarrassed.


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03 Jan 2022, 2:13 am

If a health professional tells you that you don't have ASD and you still suspect you do, I guess that just as for any other condition, you'd do well to seek a second opinion. My daughter-in-law did that and the second opinion diagnosed her as having fairly severe ASD, which is exactly what we all thought in the first place. There were also indications that the first diagnostician had been less than conscientious and honest. The diagnosis was important in getting her adjustments at university and disability benefits, without which she would very likely have failed the course, and I don't know how she could have survived economically.

I was diagnosed positively on my first assessment, just in time to stop my employer from rounding on me for not performing well on some very Aspie-unfriendly work he'd decided to rope me in for because it was lucrative for him. I don't know what I'd have done if I'd been told I didn't have ASD. When I expressed concern that the DX might not get done in time to rescue me to the Relate counsellor who first looked into the matter, I was advised that all I needed to do was to tell my employer I was waiting for an assessment and then he'd have to treat me as though I had a positive DX until the result was declared. That seemed too risky for my liking. I think my employer would have felt safe to apply more force than ever if I'd not got the DX. Even after I'd got it, although adjustments were made, they never put them in writing, and my suspicion is that they wanted to leave the door open to renege on the deal should the opportunity arise. So I kept it very quiet and paid for the DX to be done privately rather than wait for the NHS to get off their butts. As the paymaster I was able to pick somebody I knew had expertise in autism. With the NHS they might have done it on a shoestring and given me a clown.



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03 Jan 2022, 6:07 am

I am currently undergoing assessments for ASD. My first assessment is via video call on Wednesday. I decided to pay for a private assessment rather than wait the 2/3 years for an NHS assessment.
I am also worried that they will tell me I am not autistic for three reasons; that my whole life will not be explained by this diagnosis and that I am just “sensitive” or naturally anxious; that I will not get the support I need at work or in any future jobs I may have; and that I will have paid alot of money to be assessed only for them to say “no you do not have autism”.
So I understand your situation completely and if you would like to talk about anything please PM me :)



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03 Jan 2022, 11:36 am

JourneyFan wrote:
I am currently undergoing assessments for ASD. My first assessment is via video call on Wednesday. I decided to pay for a private assessment rather than wait the 2/3 years for an NHS assessment.
I am also worried that they will tell me I am not autistic for three reasons; that my whole life will not be explained by this diagnosis and that I am just “sensitive” or naturally anxious; that I will not get the support I need at work or in any future jobs I may have; and that I will have paid alot of money to be assessed only for them to say “no you do not have autism”.
So I understand your situation completely and if you would like to talk about anything please PM me :)


You basically summed up my worries when getting assessed. Luckily I got the diagnosis, though there's a 50% chance it was me who faked it because I wanted the diagnosis.



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03 Jan 2022, 12:37 pm

JourneyFan wrote:
I am also worried that they will tell me I am not autistic for three reasons; that my whole life will not be explained by this diagnosis and that I am just “sensitive” or naturally anxious; that I will not get the support I need at work or in any future jobs I may have; and that I will have paid a lot of money to be assessed only for them to say “no you do not have autism”.

It might be worth shopping around if you're going private - diagnosticians usually have their resumes online. I got the NAS to send me a list of all the ones in my area, then I emailed the ones who were near enough and didn't seem like jerks, asked for prices, waiting times, checked out their resumes, and generally I behaved like an employer hiring staff. If you award the contract to a good-quality candidate, their DX is more likely to be correct.

If it's negative, with a bit of luck you'll still at least have found out a lot about your individual traits. Of course it's useful to find out you've got ASD, from the "a lot of things start to make sense" point of view, as it's an overarching theory that fits the known facts, but the traits themselves are useful starting points for figuring out coping strategies.

Sadly, as you suggest, AFAIK there may be no adjustments or benefits to be had for traits alone. I suppose bureaucracy shuts its ears to anything but an actual diagnosis of a recognised condition, even though the medically-certified existence of a trait that "proves" an inability to do this or that might logically be expected to indicate adjustments and benefits. I think back in the days of Disability Living Allowance it was just about possible to get a little bit of money if you could get enough bigwigs to put it in writing that you couldn't cook a 3-course meal, so maybe something of the kind is possible. They certainly have no problem doing it the other way round - picking holes in the impairment lists of diagnosed disabled people and telling them to get jobs instead of living on benefits. Maybe others know more about whether or not you can get anything done for individual traits.



Shadweller
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10 Jan 2022, 2:01 pm

Thank you to everyone that replied.

All of your replies have helped me to further ‘get my head around’ around this particular subject, although I am still a long way from fully resolving this whole thing in my own head. It is complicated isn’t it. Even the “experts” are still a long way from figuring everything out, as research developments evolve. Many aspects of Autism do make sense to me 'from the inside', but the whole diagnosis process part of things really does not.

I am concerned that a score difference of just 1 point can make the difference between getting a diagnosis or not. This is just so arbitary, and could be affected by the way a question is interpreted and answered. And also of all the tales of bad assessors who aren’t keeping up with the research. And all the other reasons that can affect the validity of an assessment. Obviously an assessment that doesn’t seem valid or fair is of no use to anyone.

I do realise that this is the best we have at this moment in time, and that things are much better now than they have been in the past. It seems to me that there is still a long way to go.

The main problem that I have in life is Social Anxiety, and I am 100% certain that all of my traits that are causing me the most difficulty in pretty much sustaining my social anxiety are characteristics of Autism.

Things like not being able to think of things to say. It often doesn’t come naturally to me to be able to convert what I am thinking or feeling into speech. So I don’t say anything. Not being able to think of appropriate things to say, not understanding the rules of small talk. Not understanding the purpose of talking for no purpose without boring myself and the other person to death. And my relationships fail.

Things like being heavily preoccupied with my own thoughts and feelings over and above external realities. So people think I’m weird. People laugh and stare and comment and verbally abuse me. I don’t know how to “mask” this behaviour. I can try to make a conscious effort to try to remain focussed and alert to external realities when there are other people around, but I can’t help but slide away at times.

Things like not knowing how to act in certain situations. A whole load of social skills type of stuff.

Then there is my routine based habits, and my emotional difficulties, and my sensory issues, and my special interests. My deep love of music and nature and animals. All of these things fit so well into the whole overarching theory of Autism. Everything is explained perfectly.

But then, if I happen to not match up with some predefined criteria where I have to meet a certain threshold, then I can be told that I do not have Autism. Even though I already know that I have so many of the traits and the explanation of my difficulties works.

I don’t understand how a person who could have so many traits, and for the explanation to make so much sense, could be told that they are not Autistic. Would that mean that the explanations are no longer valid. And that all these difficulties and problems have no cause and have happened for no reason.

Would it mean that social skill difficulties are caused for no reason – other than just being socially maladjusted. That become agitated or distressed or dissociating mentally or emotionally when stress or anxiety becomes too much, or when routines or plans become disrupted is all for no reason.

Other than one of the replies on this thread, I have not heard of someone being severely and significantly affected by traits of Autism, but not actually having Autism. Is this possible? Are there other people in this situation?

I recently finished 16 weeks of CBT for social anxiety. It didn’t help. My therapist did not understand me at all. She was pushing me with questions like “why cant I just BE myself and say whatever comes to mind?” I couldn’t really answer at the time, but I know now that the answer is that people will think I’m weird as hell when I do.



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10 Jan 2022, 4:10 pm

Double Retired wrote:
P.S. Some other conditions share some traits with Autism, by the way. That can be confusing. If you have one of those other conditions it might be good to know exactly what you are dealing with...hopefully your assessment would tell you this.
Maybe you shouldn't get hung up on getting specifically an Autism Spectrum Disorder diagnosis. That may be the diagnosis you expect or hope for but the diagnosis you should really want is the correct diagnosis.

And perhaps you should not worry about the assessment process so much, as well. It will probably work better if you aren't second-guessing stuff. I second-guessed one thing on my diagnosis and worried myself a lot—needlessly—and I think in doing so I provided the Psychologist some entertainment. Most of the assessment was entertaining for me.


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