The difficulty in obtaining a very late diagnoses

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ASPartOfMe
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01 Aug 2022, 9:50 am

I was diagnosed with autism at 34. We need more research for adult

Quote:
I’m 36, and it wasn’t until two years ago that I was diagnosed with autism. I was lucky to even find out.

The years before involved multiple therapists that didn’t work, medication that gave me bad side effects, and misdiagnoses. Navigating insurance was a constant struggle.

The first psychiatrist I saw prescribed amphetamine medication for ADHD. That medication resulted in three heart attacks at age 22. Another psychiatrist prescribed two dozen different medications. Only one worked for ADHD, but my insurance didn’t cover it so I couldn’t afford it. I can only take it now because there is a generic form available.

It was hard for me to connect with therapists because I didn’t know how therapy worked, what kinds of treatment are available and that it’s based on developing comfortable, trusting relationships.

I later sought help from the mental health organization Valley Cities. I went through several therapists there with no success. One left for another job, one finished her internship for college, and a couple just weren’t a good fit for my needs.

It was also around this time that I started to believe I may be on the autism spectrum. No other diagnosis was fitting completely; depression, anxiety and ADHD only partially explained the behaviors and symptoms I had in social situations. Information I found online showed me that I did have some traits and could be on the spectrum.

I asked my Valley Cities therapist at the time what I had to do to be tested. She said the only testing available was designed for children and teens, and I would have to go to Children’s hospital in Seattle or search online for a test. This is like asking a person with a broken leg to go buy new bandages and medical supplies on their own, without help.

I gave up in frustration and despair. Medication somewhat worked, but the side effects were awful. And although therapy groups were helpful, I needed an individual therapist I could trust. I had been spinning my wheels and not feeling or seeing improvement in my life. My faith in the system was shattered.

Meanwhile, I needed to work full time to pay bills, so I took a job as a cook, which meant I had to give up my Washington state Medicaid coverage. Suddenly, everything that had been covered through Apple Health, including therapy, medication, doctor visits and sleep studies, was in peril. The cheapest, lowest-coverage insurance was all I could afford on minimum-wage work.

The early days of the pandemic, and the months leading up to it, were excruciating with few moments of joy.

I was close to attempting suicide. I was toxic in a breakup with a friend who didn’t deserve it, which was the last straw.

I asked my mother to bring me to the hospital. The therapist at Swedish referred me to Sound Mental Health. I’m grateful that I chose to try therapy one more time, despite years of mixed results, because finally, luck went my way. I was assigned a therapist after a consultation who could treat me. As we continued working together, I began trusting her and we clicked.

On my third appointment, I asked about getting screened for autism. My therapist at Sound found a test for children and teens and asked me a series of questions, although some weren’t relevant for my age. I found out I am autistic the week of my 34th birthday in April, which also happens to be Autism Awareness Month.

Finding out was a relief because I now have something to work off of, and I know why I behave a certain way or struggle in social situations.

With a guide and stable professional support, I spent the pandemic working on myself full time.

It’s hard enough to find a therapist who accepts your insurance, accepts new clients, and has availability during the day that fits around work schedules. How am I supposed to grow as a person on the spectrum when autism in adults doesn’t have a formal guide of how it presents, and how to fit in?

There needs to be more research on autism in adults. It’s odd that I had to find out myself by looking online


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Minuteman
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09 Aug 2022, 9:49 pm

There's little to no support for people over 30. I think the psychiatric community believes that we can't be helped so they focus all their attention on kids.



Expletive01
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07 Oct 2022, 11:15 am

I didn't get diagnosed until I was 45, and about to enter college with the promise of "Grants for Disabilities" and the understanding that ASD folk tend to be ready for college much later than neuro-typical people. This would have been true if I was younger, but you are correct; no one cares once you're over 30. I completed college with under 1% of it paid for by grants.
I've been told recently and in the same day that I was too disabled for Unemployment and to go get Social Security, who then told me that I was too disabled for SSDI, but not disabled enough for SSI??? So I'm so disabled that they don't want to help me???
When I asked if the adjudicator knew anything about Autism, she said that she didn't need to, she knew the rules for SSI and that was all she needed and that I am not disabled enough. She never even asked "in what capacity I'm disabled" or "to what degree"...
Nope... they don't care.
I just delivered two speeches to Duke University's Psychology Department about "Better assistance modes for ASD patients than the current ABA model" and "The Costs of Masking/better assistance modes" who are using the information to create ASD-specific accommodation and treatment plans for Adult Autists. I am hoping that the modus operandi will change soon.
BTW: You can see the level of care that we get if you look up the JRC and electroshock therapy. Deplorable.
https://thehill.com/changing-america/re ... -us-using/
https://www.wsws.org/en/articles/2021/0 ... f-j19.html
A bill to stop it, but it has not passed even yet: https://www.nysenate.gov/newsroom/press ... -announced


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endlesslycurious
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12 Oct 2022, 10:52 pm

I just got diagnosed at nearly 42. I have been warned that their is little to no support for people like us. This is especially true for people like me who were able to get married, have kids, have a career and now own my own business. But, that doesnt mean I dont need help. The only reason I have done okay is because I mask so damn well. But, it is wearing me down and I am so damn tired.

Fortunately, the specialist that did my assessment specialized in adult autism and she is amazing so I am going to use her as much as I can for support and I am also glad I found this board. I hope to find an in-person group at some point. It would be interesting to hang out with a bunch of other autistics.



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13 Oct 2022, 2:31 am

Expletive01 wrote:
I just delivered two speeches to Duke University's Psychology Department about "Better assistance modes for ASD patients than the current ABA model" and "The Costs of Masking/better assistance modes" who are using the information to create ASD-specific accommodation and treatment plans for Adult Autists.

In what capacity did you give these speeches?

Quote:
I am hoping that the modus operandi will change soon.

In order to have meaningful change, I think we will need a bunch of new professional associations similar to the U.K.-based Association of Neurodivergent Therapists, founded in spring 2021. IMO we also need an association of neurodivergent research psychologists, an association of neurodivergent medical research scientists, and an association of autistic autism professionals, and we need these to exist in many different countries, not just the U.K.

IMO the autistic community's main problem is that we are vastly under-organized. Informal social media networks are not enough, or are activist/advocacy groups like ASAN -- although these are needed too.


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13 Oct 2022, 8:31 am

First saw a pdoc autumn 1973. First diagnosed with SMI (schizophrenia) 1975. Asperger's 2019. The dx confirmed I was right in thinking there was more going on than SMI. However too much damage was done pre the Asperger's dx that can't be reversed. I have to live with the consequences of that as best I can. Some days are easier than others when it comes to doing that.



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13 Oct 2022, 8:52 am

[quote="Expletive01"]
I've been told recently and in the same day that I was too disabled for Unemployment and to go get Social Security, who then told me that I was too disabled for SSDI, but not disabled enough for SSI??? So I'm so disabled that they don't want to help me???
When I asked if the adjudicator knew anything about Autism, she said that she didn't need to, she knew the rules for SSI and that was all she needed and that I am not disabled enough. She never even asked "in what capacity I'm disabled" or "to what degree"...
Nope... they don't care.

It is unfortunately common for social security employees to not know what they are talking about. I know because I work with people who get social security for disabilities.

SSDI is awarded to people who have been employed for a minimum amount of time (I would have to look it up) and now are too disabled to work. If you are working and earning more than about $800/month (again I would have to look up the current allowed amount), you can't get SSDI.

SSI, in the context of being awarded to disabled individuals, is awarded to people who have never worked or not worked long enough to be eligible for SSDI. Generally speaking. someone getting SSI is too disabled to work except possibly in a supported employment type program.

The rules are very complicated and many employees of social security do not understand them all. Also there are changes that occur and not everyone knows about the changes.

(Another whole category is people who are disabled and a parent dies or retires.)

I have not been formally diagnosed because there really isn't any point. If one reads any descriptions of what autism looks like in professional women, I am right on target. There are no programs which would assist me.

There is, in my state (and others) programs which provide services to adults with autism and who have serious impairments in the ability to live and work independently. That said, they are difficult to get into and waiting lists are usually long. Also, they require applicants to be able to document their autism disability before the age 18. Well, duh, if so many aren't being identified until they are adults, they then do not qualify for these programs.


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ASPartOfMe
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13 Oct 2022, 9:46 am

blazingstar wrote:
Expletive01 wrote:
I've been told recently and in the same day that I was too disabled for Unemployment and to go get Social Security, who then told me that I was too disabled for SSDI, but not disabled enough for SSI??? So I'm so disabled that they don't want to help me???
When I asked if the adjudicator knew anything about Autism, she said that she didn't need to, she knew the rules for SSI and that was all she needed and that I am not disabled enough. She never even asked "in what capacity I'm disabled" or "to what degree"...
Nope... they don't care.

It is unfortunately common for social security employees to not know what they are talking about. I know because I work with people who get social security for disabilities.

SSDI is awarded to people who have been employed for a minimum amount of time (I would have to look it up) and now are too disabled to work. If you are working and earning more than about $800/month (again I would have to look up the current allowed amount), you can't get SSDI.

SSI, in the context of being awarded to disabled individuals, is awarded to people who have never worked or not worked long enough to be eligible for SSDI. Generally speaking. someone getting SSI is too disabled to work except possibly in a supported employment type program.

The rules are very complicated and many employees of social security do not understand them all. Also there are changes that occur and not everyone knows about the changes.

(Another whole category is people who are disabled and a parent dies or retires.)

I have not been formally diagnosed because there really isn't any point. If one reads any descriptions of what autism looks like in professional women, I am right on target. There are no programs which would assist me.

There is, in my state (and others) programs which provide services to adults with autism and who have serious impairments in the ability to live and work independently. That said, they are difficult to get into and waiting lists are usually long. Also, they require applicants to be able to document their autism disability before the age 18. Well, duh, if so many aren't being identified until they are adults, they then do not qualify for these programs.

It is the invisible disability problem. I was never approved for benefits of any kind due to my diagnosed Autism. The rule of thumb is you will be rejected first, see a disability lawyer get approved. After the first rejection I saw three disability lawyers all of whom would not even take my case because my salary back in the 1980’s proved I was not disabled enough. The job market closing off for non team players, age discrimination not considerations. As soon as I had a stroke and they observed a small limp and a cane everything went through.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


rse92
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13 Oct 2022, 4:08 pm

I was diagnosed at 60. I was tested at the urging of my wife. I took my diagnosis and put it in a drawer and thought very little about it for nine months. What difference did it make; I was almost 61. I didn't even Google autism until I was 61 1/2. The year and and half since then have been quite an experience.



blazingstar
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14 Oct 2022, 4:47 am

ASPartOfMe wrote:
blazingstar wrote:
Expletive01 wrote:
I've been told recently and in the same day that I was too disabled for Unemployment and to go get Social Security, who then told me that I was too disabled for SSDI, but not disabled enough for SSI??? So I'm so disabled that they don't want to help me???
When I asked if the adjudicator knew anything about Autism, she said that she didn't need to, she knew the rules for SSI and that was all she needed and that I am not disabled enough. She never even asked "in what capacity I'm disabled" or "to what degree"...
Nope... they don't care.

It is unfortunately common for social security employees to not know what they are talking about. I know because I work with people who get social security for disabilities.

SSDI is awarded to people who have been employed for a minimum amount of time (I would have to look it up) and now are too disabled to work. If you are working and earning more than about $800/month (again I would have to look up the current allowed amount), you can't get SSDI.

SSI, in the context of being awarded to disabled individuals, is awarded to people who have never worked or not worked long enough to be eligible for SSDI. Generally speaking. someone getting SSI is too disabled to work except possibly in a supported employment type program.

The rules are very complicated and many employees of social security do not understand them all. Also there are changes that occur and not everyone knows about the changes.

(Another whole category is people who are disabled and a parent dies or retires.)

I have not been formally diagnosed because there really isn't any point. If one reads any descriptions of what autism looks like in professional women, I am right on target. There are no programs which would assist me.

There is, in my state (and others) programs which provide services to adults with autism and who have serious impairments in the ability to live and work independently. That said, they are difficult to get into and waiting lists are usually long. Also, they require applicants to be able to document their autism disability before the age 18. Well, duh, if so many aren't being identified until they are adults, they then do not qualify for these programs.

It is the invisible disability problem. I was never approved for benefits of any kind due to my diagnosed Autism. The rule of thumb is you will be rejected first, see a disability lawyer get approved. After the first rejection I saw three disability lawyers all of whom would not even take my case because my salary back in the 1980’s proved I was not disabled enough. The job market closing off for non team players, age discrimination not considerations. As soon as I had a stroke and they observed a small limp and a cane everything went through.


You are correct that for SSI, you will be denied first time around. It takes 2-3 applications and maybe an attorney to get SSI. And you are correct that it goes better with a visible physical disability.

Also, if you apply for SSI and are denied, they won’t tell you about SSDI. If you worked long enough, you would be eligible for SSDI - BUT THEY WONT TELL YOU THAT, at least many won’t.

Also, SSI often qualifies you for Medicaid (varies state to state.) SSDI qualifies you for Medicare (federal).

It is worth the fight. It is a life time of benefits. I also understand it is difficult to keep up the fight without an advocate to help.


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14 Oct 2022, 10:31 am

I was denied first time but approved for SSI the second time with a disability lawyer. I worked a few years.At the time I was diagnosed with bipolar and GAD.
They never even mentioned autism or PTSD.My therapist wanted me to see a specialist in autism but I would need to pay out of pocket and drive for hours.So that didn’t happen.
It took about a year to be approved and I had to go in front of a judge.I did receive back pay from the time of my first application.


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Expletive01
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14 Oct 2022, 10:35 am

I was a guest panelist and gave a speech for 45 minutes. The first ABA talk I delivered was about the problems that my son and I have encountered in ABA, that it is cruelly the process of "trying to learn to not be autistic", and offered some alternate strategies like helping to identify "workarounds" as a form of assistance which embraces our diverse abilities, our needs, our undeniable personality traits and stims, and resolves to meet our social-expression proclivities.
I call using ASD "deficits" in different context to accommodate for a different ASD "deficit"; a "workaround".
For example; I am ASD forgetful, but my "ASD special focus" is physics and computerized automation. I would take notes about my homework, set alarms, and make lists. But they were all rendered useless by my ASD stream-of-consciousness. Then by the time I was back from school, I was so exhausted from Masking that I would just pass out once home and not remember to check my "to do" list.
My ASD "special focuses" are Science and Computer "everything", so; to make it through school, I created a system of automation which evolved into a personal AI Assistant/Personal Cloud/Security Suite that I built and hosted from my apartment. I took it down after I finished school, but I recently did something similar for my garden to accommodate for the unreliable income and inconsistent watering schedule that comes with my flavor of Autism.
The second Guest Panelist speech I delivered was was about "Masking" vs "Chameleoning" and the immediate, short-term and long-term mental, physical, spiritual, and philosophical costs of both.
A quick aside for those who don't know:
Masking: Hiding some or all of your neuro-divergence. It is the #1 cause of suicide for Autists. Masking can be hidden or shared with the audience, which does not change the level or consistency of the stress that Masking intrinsically comes with. This can be conscious or unconsciously activated, it is exhausting, and you cannot stop or risk losing your job, relationship, friendship,... https://www.healthline.com/health/autism/autism-masking
Chameleoning: Trying to not get caught Masking, and is even more commonly employed than simple Masking.

As I told my audience; I don't assume that I speak for the entire Neuro-diverse community, but I am speaking up because we have to say something to get ABA changed to not resemble a "cure", as we are not sick. Rather, an alternate socialization model which embraces our uniqueness and values our strengths beyond "what can we professionally be used for then discarded", which is the ASD employment model that I have primarily encountered. When I speak with my peers, that is the story that I hear more often than not; so at least within my sphere-of-influence this is the top issue-set.


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ASPartOfMe
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14 Oct 2022, 12:21 pm

blazingstar wrote:
ASPartOfMe wrote:
blazingstar wrote:
Expletive01 wrote:
I've been told recently and in the same day that I was too disabled for Unemployment and to go get Social Security, who then told me that I was too disabled for SSDI, but not disabled enough for SSI??? So I'm so disabled that they don't want to help me???
When I asked if the adjudicator knew anything about Autism, she said that she didn't need to, she knew the rules for SSI and that was all she needed and that I am not disabled enough. She never even asked "in what capacity I'm disabled" or "to what degree"...
Nope... they don't care.

It is unfortunately common for social security employees to not know what they are talking about. I know because I work with people who get social security for disabilities.

SSDI is awarded to people who have been employed for a minimum amount of time (I would have to look it up) and now are too disabled to work. If you are working and earning more than about $800/month (again I would have to look up the current allowed amount), you can't get SSDI.

SSI, in the context of being awarded to disabled individuals, is awarded to people who have never worked or not worked long enough to be eligible for SSDI. Generally speaking. someone getting SSI is too disabled to work except possibly in a supported employment type program.

The rules are very complicated and many employees of social security do not understand them all. Also there are changes that occur and not everyone knows about the changes.

(Another whole category is people who are disabled and a parent dies or retires.)

I have not been formally diagnosed because there really isn't any point. If one reads any descriptions of what autism looks like in professional women, I am right on target. There are no programs which would assist me.

There is, in my state (and others) programs which provide services to adults with autism and who have serious impairments in the ability to live and work independently. That said, they are difficult to get into and waiting lists are usually long. Also, they require applicants to be able to document their autism disability before the age 18. Well, duh, if so many aren't being identified until they are adults, they then do not qualify for these programs.

It is the invisible disability problem. I was never approved for benefits of any kind due to my diagnosed Autism. The rule of thumb is you will be rejected first, see a disability lawyer get approved. After the first rejection I saw three disability lawyers all of whom would not even take my case because my salary back in the 1980’s proved I was not disabled enough. The job market closing off for non team players, age discrimination not considerations. As soon as I had a stroke and they observed a small limp and a cane everything went through.


You are correct that for SSI, you will be denied first time around. It takes 2-3 applications and maybe an attorney to get SSI. And you are correct that it goes better with a visible physical disability.

Also, if you apply for SSI and are denied, they won’t tell you about SSDI. If you worked long enough, you would be eligible for SSDI - BUT THEY WONT TELL YOU THAT, at least many won’t.

Also, SSI often qualifies you for Medicaid (varies state to state.) SSDI qualifies you for Medicare (federal).

It is worth the fight. It is a life time of benefits. I also understand it is difficult to keep up the fight without an advocate to help.


For our older members if you get medicaid that transfers over to medicare when you turn 65. Medicare choses the “Medicare Advantage” plan for your medicaid benefits. You have the option to ignore thier choice. I just told my medicaid insurance company I wanted to their Medicare Advantage plan. They did all the work of rolling over my Medicaid into their medicare advantage plan and getting Medicare to switch their choice of insurance companies to mine. A caveat is I just turned 65 last month so have had little experience dealing with the health care system under Medicare.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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15 Oct 2022, 6:54 am

^ Medicare can be “straight” Medicare or one of several HMOs. You have a choice of plans and can change your plan each year during “open enrollment.”

Some of the HMOs aggressively market their plans. Each person should review the various plans and pick the one that fits their needs best.

Some plans cover dental, for example.
Some plans provide actual cash for OTC medications.
Some plan provide as much as $250/month to be spent on, for example, “healthy” foods.

Warning, some plans will change each year, so you have to stay on top of it. (Not easy to do, I know.)

If you are low income, there are plans which have 0 or very low monthly payments. (You have to pay for Medicare Part B and D. They take the money out of your social security benefit.) These free and low cost plans do change every year. No company wants to hold onto them.

Medicare Advantage is also called Part C. It combines parts A (free) and part B (fee.) It sometimes includes prescription drug coverage and sometimes it doesn’t. Prescription Drug coverage is Part D.

Confused yet? :D


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Expletive01
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15 Oct 2022, 10:04 am

Thank you all for the advice. I'll try again.
I've made it to the court hearing once four years ago, but they denied me there based on the judge saying: "let's see if you can get a job". There was no other explanation. That was with an attorney who did nothing at all to assist before, during or after the hearing.

I've tried twice recently and been denied a hearing both times as well as having been denied by two attorneys because I "fall between the cracks". I am diagnosed "severely disabled", but the system isn't designed to handle my sorts of disabilities. They only help out with the classic "visible disabilities" or "temporary disabilities", but not for anyone who's disability involves self-advocacy problems.

When I've asked in all seriousness how to get it changed, it's just a system of rules we made up, changing them is as simple as just changing them; I was told to "talk to the governor, that's who makes and changes those rules". I've taken their advice and climbed the ladder to the governor's policy advisor who told me that "it would be taken under advisement", but gave every indication that they would be doing nothing with the information.

Nonetheless, I have been seeking work since May, and am no closer now than I was then. I am interviewing at least 3x/wk, but that's where I fall down as an Autie...
I am good at what I do, but not the social aspect of interviews; which have nothing to do with each other, but stops me from working just the same.


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15 Oct 2022, 7:49 pm

SSI and SSDI are federal programs. The state legislature and the state governor have nothing to do with it. So taking your complaints there is not going to be productive.

You could try approaching your state senator to the US Senate, or your Representative to the US House of Representatives. Elected representatives have staff who will try to help in some of these situations. I've had good results from requesting help from State senators and representatives. I've never tried it at the federal level.

You probably have a Disability Rights organization in your state. Their services are free. You can contact them for information on the best way to advocate for your services.

Google "Disability Rights [your state name]"


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