Self Dxers Who Don't Want a Diagnosis; Why Not?

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StarTrekker
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08 Feb 2020, 9:27 pm

I was going back through some of my old threads (like, from eight years ago, god I feel old!) and found several posts that sparked this question. Those of you here who are self-diagnosed but don't want a diagnosis, why don't you want one?


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QuantumChemist
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08 Feb 2020, 10:40 pm

I am self-identifying as being on the spectrum. The reasons I do not want a formal diagnosis are as follows:

1.) The cost would run several thousands of dollars, money that I just do not have after paying my bills. Student loans do not pay themselves.

2.) The time involved would likely interfere with my work schedule. Many times I am working 50+ hours a week on my job. I do not get overtime, it is expected of me to do what is needed. I am on call for an expensive instrument 24/7. If it breaks down, I must be there to get it fixed. I am very limited on my vacation/sick time because of this issue.

3.) Being middle-aged (and likely Aspie), there would be no benefits or resources gained with a formal diagnosis.

4.) A formal diagnosis could destroy my career at the place I work at. It would inhibit future employment opportunities in my field. Sad, but true.



kraftiekortie
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09 Feb 2020, 7:15 am

Cost, primarily. Not worth the price vis a vis the benefits of diagnosis, especially if one is working rather than going to school.

I’m a person who was diagnosed very young.



magz
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09 Feb 2020, 7:29 am

Not really self dx - I was identified as having AS by my therapist - but not wanting formal diagnosis. Reasons:

1. Cost. Money and time and anxiety to go through the process. I wear long hair because an appointment with a hairdresser is difficult enough for me and with all the scheduled docs and dentists for my children, I'm drained enough;
2. No services available for AS adults in my situation (well-off housewife / part time researcher);
3. The experience of my psychiatric misdiagnosis was disastrous, a trauma for me and my husband and I don't want to possibly go through it again.
4. I've found one psychiatrist and one psychologist who do help me and that's what counts.


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09 Feb 2020, 8:13 am

QuantumChemist wrote:
I am self-identifying as being on the spectrum. The reasons I do not want a formal diagnosis are as follows:

1.) The cost would run several thousands of dollars, money that I just do not have after paying my bills. Student loans do not pay themselves.

2.) The time involved would likely interfere with my work schedule. Many times I am working 50+ hours a week on my job. I do not get overtime, it is expected of me to do what is needed. I am on call for an expensive instrument 24/7. If it breaks down, I must be there to get it fixed. I am very limited on my vacation/sick time because of this issue.

3.) Being middle-aged (and likely Aspie), there would be no benefits or resources gained with a formal diagnosis.

4.) A formal diagnosis could destroy my career at the place I work at. It would inhibit future employment opportunities in my field. Sad, but true.


Yep. Me too. Except I am a Senior Citizen, also self-diagnosed. :D

5. Risk of error in the diagnostic error in high functioning older women and the trauma that could entail.

6. No need for a formal dx to access helpful information.


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09 Feb 2020, 8:59 am

kraftiekortie wrote:
Cost, primarily. Not worth the price vis a vis the benefits of diagnosis, especially if one is working rather than going to school.

This is how it was for me.



quite an extreme
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09 Feb 2020, 11:40 am

It costs time and money and doesn't involves social benefits to me. I'm ASD level 0. I have a full time job and I'm better paid then most people in the region here. A diagnosis can even involve higher costs for some insurances and there is no cure for Asperger's until now either.
The most important thing is that I know what's up with me and for this I'm able to improve now. And I did improve a lot since I realized my problems. I learned eye-contact and to care about my behaviour and the one of other people more.
So what are the benefits for me of an official diagnosis? I have to deal whith the one who I am with or without it. I don't even want to learn how to fit in. It's all they would offer to me after a diagnosis. But I need to learn how to deal with NTs right and how to cause them to adapt to me because they are a lot better at adapting than me either.
Once I came here to find some friends for doing this. :twisted: But most here have either really problems or are just to much into suffering. :roll: It wasn't what I expected. But at least I found also some nice people here. :wink:


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SharonB
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09 Feb 2020, 5:09 pm

My mom is elderly and found self-acceptance another way. She does not like "labels". That said, if my NT father passes first away she would likely need Executive Function (and Financial) support. To live independently she'd likely need an aid (available in my region with a diagnosis) or she may choose instead to live with me or another group setting.



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09 Feb 2020, 8:11 pm

SharonB wrote:
My mom is elderly and found self-acceptance another way. She does not like "labels". That said, if my NT father passes first away she would likely need Executive Function (and Financial) support. To live independently she'd likely need an aid (available in my region with a diagnosis) or she may choose instead to live with me or another group setting.


I don't know how old your dad is, or how close he is to dying, but if your mom is going to need a diagnosis to get supports after he's gone, personally I'd recommend starting the process as soon as possible; it can take a while to find an affordable doctor in your region who sees adults for autism, particularly older adults.


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10 Feb 2020, 8:42 am

If you don't mind a recently diagnosed Aspie jumping in, I resisted for many years until my wife insisted and to be honest it wasn't worth the effort to get diagnosed. Here is why:

1) The cost was almost $2500. For how little the clinician did that's nothing short of a ripoff. Granted most of it was covered by insurance but that means I had to sacrifice 2 years of insurance coverage for counselling or therapy
2) The clinician was supposedly a ASD expert with a Doctorate yet barely knew more than I did about Autism. Ditto to my last therapist who barely knew anything about Autism despite having a Doctorate in Psychology and significant International experience.
3) The recommendations the report offered wasn't anything I could have easily done on my own although I haven't read the books she suggested. I can at least check the "disabled" box in government jobs without feeling guilty but it isn't really going to help much anyway.
4) The report was full of small but significant factual errors.
5) Basically all the diagnosis process involved was answering some questions, doing some small tasks and then getting my wife and older brother to essentially confirm what I told her and that the symptoms go back to early childhood (i.e. not based on trauma later in life).
6) Even the clinician admitted the criteria were for children and she even mentioned how she doesn't like the fact it is broken down into 3 levels because adults are far more complicated than that.
7) It was a significant time investment for both my wife and I, having to sacrifice two Saturday afternoons and to arrange childcare.

Realistically the only benefit is that I can now say I am Autistic and when I get the inevitable "no you aren't!" reactions I usually get I can point to the fact that I have the top Autism specialist in the region telling me on paper. Maybe if I was younger I could have been steered on a different path in life or given extra help but at this stage, I really don't know what else I get other than relief that I am not crazy and to know what to look for in my son although so far he is a social butterfly who shows no signs of any issues.

I get annoyed when some posters here would mention how only a professional can diagnose you as in my experience it was no different than getting a doctor to confirm you have a missing limb or that are heterosexual. Sure, there is a tiny chance you could be hallucinating it but almost everyone knows if they are missing an arm and who they are attracted to. If you relate to this website, there is a very good chance you are somewhere on or near the spectrum.



kraftiekortie
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10 Feb 2020, 8:53 am

What benefit would an older person get in the US through an autism diagnosis alone?



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10 Feb 2020, 9:34 am

My therapist has many autistic clients, yet when I speak to him about my aspie "friend" he seems to have so many stereotypical generalisations and misconceptions.
It really is impossible to depend on a really accurate diagnosis even from those qualified and authorised to do so.

I have aspie friends who benefit slightly from being diagnosed as far as goverment financial support (nothing impressive in my country) is concerned. Also there are employment accomodations for the lower functioning, supermarkets and coffee shops, some hair salons are subsidized by the government to employ disabled people but some greatly exploit them with ridiculously long hours and low pay.
I understand the need to know. I felt the same when, after turning over every possible stone to reach a diagnosis for my sons' ADHD in order to ease his suffering and find some relief for him , when the psychiatrist told me I also have ADD I thought "that's it! I always knew I I was different. Not crazy, not stupid, just wired differently." It helped me to live with myself in acceptance and find ways to compensate for the crazy bits. It also helped me to see the attributes and talents that come with ADD and ADHD. My son is really disabled by it and pays the price every day of his life, but he is a brilliant musician, artist and healer, he has incredible sensitivity and kindness. A diagnosis helped me to protect him through the horrendous school system and demand his accomodations, implementation of all his recommendations and the systems tolerance, without it he would have been treated like a reject. He was before diagnosis. The school staff used to grit their teeth when I showed up " here comes the battle axe again".Even with a diagnosis I had to go into battle every single day with uncaring, narrow- minded, lazy educators.


It's outrageous to have to pay $2,500 for a diagnosis, GiantHockeyFan, outrageous. It should be free of charge. You now know anyhow, I really hope that it can bring you some solice at least.


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BTDT
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10 Feb 2020, 10:43 am

Roses for Autism did job training for years. They dd not require an official diagnoses for training. They did require that you socialize while eating lunch. Eating alone was against their rules.



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10 Feb 2020, 11:10 am

I'm not a self-Dxer but I can attest to what GHF, Amity and magz wrote. I chose to have a professional diagnosis for Autism and I'm now doing a professional assessment for ADHD.

The tests are outlandishly expensive. Like GHF said, I also have private insurance benefits but they only cover to a maximum per year. For my ASD assessment I had already used my year's allotment for private CPTSD therapy, so I had to pay out of pocket for the entire fee. My ADHD assessment is equally expensive (about 80% of the cost of the ASD test). I will go without any CPTSD or ASD psychotherapy for the entire year to offset this insurance claim. That is setting me back significantly in my trauma recovery.

Both my ASD and ADHD testing locations are approximately an hour from home. For ASD I travelled by Uber because I wasn't allowed to drive at that point in time (I had a stroke). I am driving again but the ADHD location is overwhelming and busy and I'm not comfortable to drive there or find city parking, so I'm also using Uber. ADHD has four appointments, therefore eight Uber trips of an hour each. The transportation costs almost the same as the test that I'm getting for "free" on insurance.

My ASD assessment said I'm Level 2 and I need "significant support", but I've yet to find any, apart from an ASD counsellor who does CBT. I haven't had much benefit from her and doubt I'll go back when my benefits renew. I can't find adult OT therapy for sensory processing issues, and I can't find any autism services for executive function or daily living support. That's why I'm now pursuing an ADHD diagnosis. I feel like there might (underscore MIGHT) be a bit more support for ADHD. At least there will be medication I can try.

That all being said I'm glad I did the assessments. I think it's invaluable information to be tested in so many criteria and to have an idea where I stand in comparison to others of my age / gender with social functioning, restrictive interests, attention and memory.



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10 Feb 2020, 12:17 pm

^ Many valid points here.

Professional dx. When I was around 5 & 8 my school couldn't figure out what was going on and Asperger's/"HFA" wasn't a thing -although H. Asperger pointed it out around 40 years previously. I took multiple tests but things were obfuscated by the way I was growing up.

Later, I remember reading about a doctor with ASD that specialized in ASD and that was the best decision ever to go see them. The doctor picked up on the slightest things, tics, even ways of thinking and ways of speaking, etc. I wouldn't waste time with a psych that has a side expertise in ASD or a minimal investment in ASD. If you are lucky enough to find an ASD Dr. with ASD see them (I know of about 5 in one area). Even if you can't afford a dx and are convinced you are ASD, it may help to see an ASD doctor. (Sliding fee scale)

One immediate downside of self dx however, is that there are certain cluster-b personalty disorders that seemingly have a few similarities to parts of ASD but are not the same. ASD also is not just one thing; changes to the DSM made it one thing now under an umbrella but it is more complex than forum commentary.

Something as small as a motivation can completely change a dx. Throw in co-morbidities and it is near impossible to diagnose yourself. One really has to do a ton of concentrated study (specific training) to see the differences sometimes nuances. Anyway, I'll quit boring you with the diatribe.