How do you get professionals to take you seriously?

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Coralvine
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14 Mar 2022, 5:44 pm

My daughter thinks I have Asperger's. I think I have Asperger's, and three different people think my father has Asperger's. I've taken two separate online tests for Asperger's, and the results showed it's highly likely I have it. Not only that, I recently took a DNA test that also showed I have a 1.42 higher likelihood than the majority of people to be on the autism spectrum. This said, I couldn't get my former therapist (Master's in counseling) or my current MD to take it seriously. They insinuate it's not all that important and/or that it's unlikely I have it. They don't suggest I get professionally tested. Yet, it is important because I may have a health problem (mast cell activation syndrome) related to being on the spectrum. My doctor tells me even if I have mast cell activation syndrome, there is nothing that can be done for it. From my research, I see that a change in diet or taking an antihistamine might make a difference. I feel like my health/mental health professionals are indifferent. Have you encountered professional people in your past who poo-pooed your being diagnosed? Were you diagnosed as an adult? What were your experiences? FYI - I don't go to the doctor all that often.



XenopusMan
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14 Mar 2022, 6:37 pm

Hey. First off I want to say that I’m not sure getting an autism diagnosis would help you with your mast cell issue, but it would probably help you manage your life if you are having any difficulties due to your autism symptoms. That’s why I got a neuropsych eval at age 20. I too was told by my therapist that he did not see it in me at all, as well as my psychiatrist, and my parents did not believe so either. They knew I had Sensory Processing Disorder and severe motor skill delays, but did not think it to be autism. And in all honesty I often doubt my diagnosis. That said, I tried to convince the evaluators that I DIDN’T have it, not the other way around.

But what I’m trying to say is find someone who can evaluate and diagnose adults, especially women. It may have to be a specialist, I know a girl who had to go to somebody who specializes in girls on the spectrum as the ADOS-2 wouldn’t pick up on her due to her masking (the ADOS-2 did pick up on my supposed autism, but I still think it was my other issues triggering a false positive).

But I think the cell issue will probably not be able to be helped by that diagnosis, why do you think it would?



Coralvine
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14 Mar 2022, 6:59 pm

First, thank you for answering me. Apparently, mast cell activation syndrome is more prevalent in people on the autism spectrum. I didn't know this until my daughter sent me a link to the information that showed this condition is found more often in people who are on the spectrum. After she sent me the link, I decided to submit my DNA to find out if I might have Asperger's. While the results aren't definitive, I have an increased likelihood of being on the spectrum.

I have worked very hard to behave in a more neuro-typical fashion, but frankly, I've always had issues fitting in. I can't always tell when people are joking with me. In the past, my husband would say I always told things as I saw them. You never had to guess about anything with me. My subsequent boyfriend said I took things far too literally. I have never been interested in girly stuff. I don't and never have dressed fashionably. I didn't realize I was being rude to people sometimes. As a kid, I was kicked out of school in the 4th grade for bad behavior. I wouldn't brush my hair. I hated the way socks felt on my feet. I only like to wear cotton fabric, and it has to be loose, not tight. I hate change. I don't own a cell phone and I still sleep in the same bed that I slept in when I was six years old. (I'm 60.) There's more, but that's enough. I'll see who I can find to test me. Thanks again.



XenopusMan
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14 Mar 2022, 7:24 pm

Yeah it sounds like a good deal of symptoms, if you feel like it’s worth it I’d recommend searching for someone in your area that can evaluate you. It’ll probably have to be a specialist in adult women with autism though, many psychologists will dismiss you just for being a 60-year old woman with a daughter. But what I meant about the cell issue is it sounds like a medical problem, and not something a psychologist would help you with. It could be associated with autism, but I’m not sure an autism diagnosis would lead to any more assistance will your mast cell problem.



goldfish21
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22 Mar 2022, 11:15 pm

If you think a change in diet or taking an antihistamine will help make you healthier, why don't you just do those things and find out?


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QFT
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22 Mar 2022, 11:40 pm

Coralvine wrote:
Not only that, I recently took a DNA test that also showed I have a 1.42 higher likelihood than the majority of people to be on the autism spectrum.


Side question: can you tell me where to take such a test. I know I have Asperger but I am still curious whether it would show up on a DNA. Never had DNA tests done and used to assume they don't exist until you just mentioned it now.

As far as the main topic, it seems like professionals won't take it seriously if they have their mind made up that you don't have something or other. I feel like I might be pre-diabetic on my home glucometers, but none of the professionals take me seriously: they insist they are certain I don't have it. But with Asperger, in my case, they all know I have it. So I guess professionals like to stick together or something.



Earthbound_Alien
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23 Mar 2022, 3:40 am

you don't

take the piss out if them



Earthbound_Alien
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23 Mar 2022, 3:40 am

sticks up bums

just sayin'



Coralvine
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23 Mar 2022, 11:22 am

To GoldFifsh21: You are right on track.--Thank you for your suggestions. I plan to try both an antihistamine and diet. Coincidentally, I was invited to a neighbor's party on Saturday, and sat across from a dietitian who was well-versed in food allergies. In fact, this is why she became a dietitian. She recommended I try a food rotation diet. I plan to do this but will seek a referral so I can get more specific guidelines. She was terrific. As to an antihistamine, that's next on my list, but I have to take them when I have some down time because antihistamines make me sleepy.

QFT: Regarding genetic testing. I took a consumer grade genetic test for both health and ancestry. There are several on the market. I don't recommend one more than another. The original test did not test for autism-related genes. Subsequent to the initial test, I submitted my DNA from the first company to a second company that does more in-depth testing. The cost was under $20. I will send you a private message with their name since I don't want anyone to think I'm promoting the company in any way. This is what they sent to me:

1.42x risk of Autism Worse cell adhesion in neurons. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008767/ Increased risk of Autism Spectrum Disorders.
rs4307059— compared to two copies of a C, each copy of the more common T version increased the odds of autism by 1.19 times. http://dx.doi.org/10.1038/nature07999

Bad Repute
3 Magnitude
38.1% Frequency

I gave this info. in its original format to my doc in support of my health problems. He didn't comment. I don't think he's in favor of consumer genetic testing. Some 3 years ago when I told him I wanted to get genetic testing to know my Alzheimer's risk he wasn't in favor of it.



blueroses
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27 Mar 2022, 9:01 am

OP, I'm sorry that you're going through this. Dealing with doctors can be so difficult when you have conditions they are not familiar with and you're forced to do research on your own. You have no choice but to educate yourself and become your own advocate, but then doctors can become annoyed or write you off as being a hypochondriac when you do.

If your doctors don't seem knowledgeable about the conditions you want to be screened for, there is nothing wrong with pushing for a referral to a specialist to "rule it out." Often doctors who will write off the concerns of a patient won't write off the opinion of a specialist. Someone once suggested to me that if a doctor refuses to provide a specialist referral that I push them to specifically note it in my medical records that I had asked for one and they refused. The thinking with that suggestion was that doctors are so concerned about the potential legal implications of a failure to diagnose a condition that they would sooner just provide an "unnecessary" referral than put it in writing that they refused. Just an idea.

I don't personally have MCAS that I am aware, although I do occasionally have some weird reactions to particular chemicals that make me wonder. But, it's a common comorbidity of another condition I have, so I know a little about it and you're right. It may not be cureable, but it is treatable. So, it sounds like you may not be getting good advice from your doctor in that regard.

MCAS can be associated with Hypermobile Spectrum Disorder or Hypermobile Ehlers Danlos Syndrome, which I am diagnosed with. My understanding is that HSD and HEDS are more common in people on the spectrum (especially women) than the general population. So, if you are (or were, as a child) exceptionally flexible or "double-jointed" and have issues with musculoskeletal pain now, that may be worth being screened for also. That's another condition that is not curable and the primary treatment is physical therapy, but having the PT be aware of your hypermobility can make a difference in the type of PT you receive and the treatment outcome. So, it can be valuable to know about, even if there isn't a cure.

Hang in there and good luck with dealing with doctors. It can be so frustrating. And, even if they may make you feel crazy, you aren't.