Advice for dealing with barriers for autism dx/services

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Brian0787
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04 Sep 2024, 12:21 am

Hi All, I just wanted to get some thoughts but what are some of the challenges you had when getting a autism diagnosis and/or receiving services for your autism diagnosis? I have a diagnosis of autism from a Psychiatrist but somehow feel that might not be enough to access services. Another Psychiatrist I seen mentioned psychological testing that would have to be done by a Psychologist. I am angry at the barriers it seems to getting diagnosed or receiving assistance services for diagnosis.

I recently applied for Medical Assistance and I have been left so exhausted trying to get responses from the State that it left me not wanting to ever try to get services again. Did you have to hire a lawyer? An advocate? Did it strain anyone financially or mentally? Do you see more benefits from it than cost? I just don't know how someone navigates the bureaucratic nightmare it takes to get diagnosed and get services. I am angry that I was never diagnosed when I was younger as I would have had a lot less challenges getting diagnosed when you are a kid then getting diagnosed when you are 37 and in need of help.

I am so disgusted at my state government in Pennsylvania that I can't even think straight. I get why people now want nothing to do with government. It leaves you so frustrated that it seems there is no benefit to it. Sorry if this is partly rant as well but am just trying to figure out how people navigate the barriers. I also now completely understand (not agree necessarily) why some people end up committing violence because of their frustrations with dealing with a government system that does more harm mentally than good. So many people must be slipping through the cracks with getting diagnosed and getting services and it's heartbreaking. Please feel free to post any thoughts or experiences as I am just at a loss as to how best to navigate some of these barriers.

I may have to face the possibility that I I will not be able to get the help I need and just have to do the best I can. Thank the good Lord for my parents who have been my biggest support. Both my parents unfortunately did not know how to navigate any of this when I was younger. I could try to move to a different state but is it really any different anywhere? I may look into hiring a lawyer (or finding some type of advocate) to navigate the system and get the help I need when I am able to afford one. I apologize for how long this is as well. I just don't know how else to express what I am asking.


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King Kat 1
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04 Sep 2024, 1:14 am

I'm in Ohio myself and have no idea how government benefits work here let alone in PA. I do know PA has some quirky laws on certain things that a lot of states don't, so likely with government benefits they do as well.

I've never been diagnosed but I want to be, however, my worry too is the cost and what insurance will cover. If had been diagnosed as a kid, I do wonder if my life would have turned out different. Maybe I would have more self-confidence and wouldn't feel so stuck in life. Back in the 1990s, everyone was clueless on this, and I slipped through the cracks for sure.


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Brian0787
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04 Sep 2024, 1:19 am

King Kat 1 wrote:
I'm in Ohio myself and have no idea how government benefits work here let alone in PA. I do know PA has some quirky laws on certain things that a lot of states don't, so likely with government benefits they do as well.

I've never been diagnosed but I want to be, however, my worry too is the cost and what insurance will cover. If had been diagnosed as a kid, I do wonder if my life would have turned out different. Maybe I would have more self-confidence and wouldn't feel so stuck in life. Back in the 1990s, everyone was clueless on this, and I slipped through the cracks for sure.


Thank you for sharing King Kat! It means alot :) PA does seem to have some quirky things going on. Hope it's not too bad where you live in Ohio. I wondered if moving down to Maryland would maybe be any better. It's a shame that so many kids fell through the cracks in the 90's and that people who want to get diagnosed can't. It just makes me mad and sad. I guess we can only do our best to navigate things as best we can. If I ever have the financial means and technical means to do so I would definitely like to help advocate for others in getting diagnosed and getting services. I wondered alot about that too what things could have been like if I got diagnosed earlier. At least I know I am not alone here :)


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autisticelders
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04 Sep 2024, 1:52 pm

https://www.pa.gov/content/dam/copapwp- ... ntal-progr legal description of the program.


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autisticelders
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04 Sep 2024, 1:57 pm

most states allow representatives or advocates/ power of attorney to assist and be present for application and interaction with officials. Pennsylvania is one of the "better" states which support autism more fully than many others and also where adult diagnosis is "a bit" easier. If you can obtain disability through medicare/ medicaid then you may qualify for several programs. Also, things like therapy and mental health as well as other health issues can be covered individually even without autism diagnosis. Your diagnosis from psychiatrist is fully acceptable for legal purposes. its official!


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Brian0787
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04 Sep 2024, 2:46 pm

autisticelders wrote:
most states allow representatives or advocates/ power of attorney to assist and be present for application and interaction with officials. Pennsylvania is one of the "better" states which support autism more fully than many others and also where adult diagnosis is "a bit" easier. If you can obtain disability through medicare/ medicaid then you may qualify for several programs. Also, things like therapy and mental health as well as other health issues can be covered individually even without autism diagnosis. Your diagnosis from psychiatrist is fully acceptable for legal purposes. its official!


Thank you, Autisticelders! I appreciate you letting me know more about Pennsylvania compared to some other states. My initial reaction because of dealing with them on the Medical Assistance side made me worried as to how they were when it came to Autism services. I might look into still hiring a representative or legal assistance as so far it has been difficult to navigate. I also appreciate you letting me know about the diagnosis! I think I was given some bad information by a Psychiatrist in Maryland who told me that the diagnosis I got "technically" might not be good enough and would maybe need Psychological testing. I did some research last night and did see that having a diagnosis from a board certified Psychiatrist was considered ok for accessing services. That gives me some relief :) At least now I can say I'm officially "diagnosed".


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