Adult Diagnosis, Medicare Coverage (U.S.)

Post Reply New Topic

I pose this question, because health care providers I have talked to are unable to answer. Has anyone here obtained either a diagnosis or services under (U.S.) Medicare coverage? In other words, at age 65 or over.

There is absolutely no doubt that I am an Aspie. Unfortunately I was almost 40 years old, before Aspergers was even recognized as a condition. However, the health care system in the United States is based on medical coding and I am all too aware that as I age, I will use more medical services than I have in the past. Having an official diagnosis may make the difference, between between being treated as "weird" (or worse) and having a recognized sensory handicap. Just imagine the difference this could make, when an older person is warehoused in some facility. If we're viewed as "eccentric," then fine. On the other hand, a lot more sinister views of Aspies are possible in our society.

I am asking the community to see if there is any experience or expertise in this subject. I figure someone on here may know a lot more than my health care providers do.

The reason you are having a challenge getting an answer is because most of your publicly financed services for ASD are going to flow through the Medicaid program, not Medicare. As has been noted in other threads on this board, there are relatively few services for adults with ASD, and those that do exist are going to be heavily focused on supporting a person in things like day-to-day living or in achieving independence. There will be relatively less focus on “treating” ASD, which is what Medicare (or a health insurance plan) would have covered.

If you want to avoid a bad experience being “warehoused” (your words) in older age, you would need to have something like a long-term care insurance policy or a lot of money saved up. You could then use the policy or personal funds to secure in-home care. That is the best way to ensure a comfortable experience. Any nursing home is going to involve compromises. Those facilities are primarily dealing with older patients who all have very serious conditions and, hence, all have special needs.

If you wanted to seek out a long-term care insurance policy, having an ASD diagnosis would almost certainly not be helpful. The policies were not affected by the insurance reforms of the Affordable Care Act (“Obamacare”). They are still medically underwritten, meaning you must disclose any and all medical conditions when applying for the policy.

For Medicare it's can you find a provider who will accept the chicken sh*t payment that Medicare pays?

For my husband at age 50, 7 years ago, the golden standard testing ran $2K. Our insurance covered none of it, and the provider cherry picked which insurances were accepted. He didn't take Medicare or Medicaid. He didn't take our version of BC/BS.

That doesn't mean someone won't take Medicare/Medicaid. You may have to really really hunt around.

If you are that worried, you can call around and find prices for private pay. Just looking for a diagnosis and not picky who gives it can be cheaper.

As for services for adults with level III autism, there are basically none. No OT, PT, or Speech will work with people beyond the age of 21 around where I live. The midwest is garbage. People on the coasts might have better luck.

My husband has autism on his charts, and medical people still don't get it. They think he's ret*rded, talk slow or treat him like he's 5. The doctors don't have anymore patience when he starts monologging. They are still abrupt. So we haven't seen a huge difference with the information. They usually think he's high (body language) or playing games when he over explains.

Maybe I'm not really understanding your query, but Medicare doesn't diagnose anyone. Doctors do. If you applied for, and received, disability from the Social Security Administration, they will automatically give you Medicare, and this is whether you are 65 years old or not.

Asperger's, by itself, won't get you SSDI. There has to be comorbities such as schizophrenia, bipolar disorder, acute depression, gouty arthritis, etc that prevent you from holding down the job you've been working in most of your life.

In the upper midwest there are not many many health care providers who will diagnose autism in an older adult or work with them specifically on autistic issues who are Medicare providers. You want their services, you pay out of pocket. This is especially true for autistic women. The providers that I found are in very small, private practices. Medicare is extremely complicated and difficult to work with so these providers don't usually sign up as Medicare providers.

I don't know yet whether or not a diagnosis will help to get funding for other services under Medicare.

Thank you. I have surmised this distinction from reading quite a bit of on-line information. I have no problem paying out of pocket, should that become necessary.



With your last paragraph, you have precisely encapsulated my own concern. When we Aspies are living independently, we can fake social competence for short periods of time, and sequester ourselves when our tank runs empty. With advancing age and greater dependence on others, we are more at the mercy of their perceptions of our mental state, which most Aspies know NT's can distort pretty badly. I especially like your remark about "monologging" to the doctors. As it is, I can't communicate anything to doctors, as patients who offer technical or scientific explanations for their medical status to an appointment are instantly written off as nuts, whether they are Aspies or not. So I keep my mouth shut. Harder to do, when you're under their observation every day instead of when one is younger and showing up for 15-minute drive-by appointments.

Perhaps you are suggesting that I'm wasting my time, if I think a "diagnosis" is going to alter my treatment by medical providers. I certainly am open to that suggestion, as I agree it is a likelihood.

My approach, which isn't for everyone, it to practice talking to health care professionals. I found out that the 3rd year medical student who looked at me before my PCP had an expertise in rashes, so we talked about poison ivy, and how to minimize the effects of contact with this nasty plant.

How about looking for a doctor(s) who also has some expertise in autism? This would be easier if you could afford it and get referrals to doctors who work outside the insurance network, but why not ask around?

I have read through many of the threads on this site about the value of obtaining an adult diagnosis, as well as looked at other websites and YouTube videos that are similarly focused. I also managed to find an article published in a scientific journal that described a study of the experiences of teenage or adult ASD diagnosis on workplace well being (which is not exactly aligned with the question you raised but still instructive). I would say the most consistently reported, positive outcome of an adult diagnosis is an improved sense of self understanding. It allows people to explain their behavior and feelings and to stop blaming themselves for difficulties they encountered earlier in life. Among the stories on the Internet, a diagnosis has also been described as helpful when one has had a long of history of severe interpersonal challenges that led to multiple misdiagnoses (e.g., ADHD, personality disorder, etc.). In those cases, an ASD diagnosis helped to refine the advice and care a person was getting. The impact of an adult ASD diagnosis on one’s relationships with others, however, is decidedly more mixed. There are stories of people having improved relationships with specific friends or family members who now have an explanation for the person’s quirks. But there are also stories of people experiencing negative reactions (e.g., having the accuracy of the diagnosis doubted or having the ASD diagnosis used as a justification for discrimination). The results of the scientific study mirrored this pattern. Overall, the participants described having an improved understanding of themselves and improved self-acceptance after diagnosis. But the impact of the diagnosis on their workplace experiences varied. Notably, those diagnosed later in life tended to report faring worse with workplace disclosure than those diagnosed earlier in life.

So, the answer to your question is decidedly muddled. The strongest reason for getting the diagnosis is because you want it. But, assuming you basically pass as neurotypical in most interactions, you can’t necessarily assume that the diagnosis will always improve your interactions with medical professionals or others. When dealing with people who are more understanding (and particularly with those well informed about ASD), the diagnosis will probably lead to greater sensitivity and concern for the specific needs that arise from ASD. But with others, their reactions—or at least their initial reactions—may be driven more by their stereotypes of ASD, which can lead to infantilizing attitudes and discriminatory behavior. Ultimately, if you want to have the ASD diagnosis and be open about it with others, then (for better and for worse) you will have to be prepared to deal with both the good and the bad reactions that come from it. It is definitely possible to deploy productive approaches, like the ones BTDT suggests, to help elicit more positive reactions. But ultimately, no one can guarantee you will entirely avoid people with less enlightened attitudes. To that end, you will have to decide given your personal circumstances if the advantages of establishing an ASD diagnosis (e.g., help to explain and guide the response to communication difficulties and sensory issues) outweigh the potential disadvantages (e.g., possible stigma arising from stereotypes and misinformation about ASD).

I don't think a diagnosis is a waste of time. My husband had to get on because of a lawsuit he was in, and the diagnosis tipped the outcome in his favor.

His biggest hassles medical care wise is emergency rooms. But ERs treat everyone sort of like crap.

My husband mother was diagnosed at 70 because everyone thought she had the beginning stages of dementia. She rambles and has a really hard time paying attention in sensory intense enviroments. Her being able to pass as NT is getting harder. Mom wasn't confused, she was shutting down, becoming non verbal and sort of aggressive. It doesn't mean she can't/ won't get dementia, it means that's not her issue at the moment.

If you get the diagnosis, at least it's documented. Documentation can save a lot of hassles.