Diagnostic, Law & Advocacy Resources for Adults???

Post Reply New Topic

Hi - An open call for resources, ideas and contacts for an adult diagnosis. I am based in Los Angeles and my excruciating ongoing search has yielded a spot on a waiting list at UCLA still years long. Local County intake centers as well as other government institutions either have no infrastructure for autism or any assessment or treatment is strictly for children. MediCal doesn't cover a diagnosis. The $5,000 diagnosis from a private doctor is out of reach and attempts to obtain help or introductions from my outreach to them as well as the larger domestic institutions have produced an unhelpful set of rejections, demoralizing replies and vague referrals. Are there advocates or lawyers who might be able to help me? I am easily lost defending myself or navigating through massive and impersonal systems. I need a knowledgeable person to at least help me navigate and ensure proper follow through. Does anything like this exist? I've applied for Social Security disability but four years in and more postponements related to the shut downs, it's not anything reliable certainly for another six months. Are there an opportunities or successes in other countries? Given my experience, I am questioning the validity of credentials and testing here in the States. Then again, I've been on my own. I do not know what to present or ask for in my search and issues understanding and placing myself ironically contribute to the inability to connect. All appreciated in advance.

Are you sure Medi-Cal won't cover an evaluation? Sometimes they will cover something that you get referred to, but not the same type of care if you simply try to go straight there without a referral.

Do you have a primary care doctor? Have you tried speaking to this person about your autism-related problems and asking for a referral for evaluation, or even just a referral to some kind of counseling or therapy? Even just being seen by a therapist might help you get a referral because the therapist can observe you and decide whether you need to be evaluated.

Medi-Cal has an omsbudsman and a complaint process you can use if someone working for Medi-Cal or your medical provider has done something wrong. If those avenues don't address the problem, you could also complain to the department of managed care. They can't help people who are struggling to navigate Medi-cal or access to care.

A lawyer can't be your advocate or help you with medical or insurance staff who give you poor information.

You might be able to find an advocate if you have some other sort of diagnosis that suggests you have difficulty navigating the system. Look for a disability rights organization or try calling 211 and asking for disability rights information.

Some universities provide free or reduced-cost neuropsychological evaluations. I can't vouch for the quality, however.

aane.org for New England area in the US

Appreciate the replies. My doctor placed me on a waitlist at UCLA. That's all they could do. Eight months later, I've been advised to basically pretend that doesn't exist because it's years long. This indicates the scope of the problem. I went to my doctor to get a referral for a chiropractor in October. I still don;t have a referral. No problem showing I have problems getting the assistance needed. I took me eight months of slipping through the cracks to get Medical. But Five years in, it's all added up and I no longer have a home come the next few weeks. I've been stuck between a rock and a hard place and asking for help either sends me into frustration that exaggerates my problems or I can't explain what I need. I don;t understand the condition enough which is why I need testing. I can;t get tested without the money or advocate. Disability is well in year four. No advocate or help or a way to really understand why. My queries sort of get brushed off even with Autism organizations because I'm an adult. I'm also an adult who ran out of money and the vast majority of autistic people getting care and treatment do so because they can pay for it. I was right there with them until I got the news as to what it was. I'm spinning my wheels in the middle of everyone and still falling through. Related organizations reject me as I'm too autistic or they don't know enough to help. The group of people who are educated to this are very small. The ones with knowledge, an open mind and the resources to help another so far non existent. That's what I need. Until someone can see that, we're missing not just people like me, but everyone that's on the streets now faced the same problem. I hold a degree, worked for foreign governments and top 10 fortune companies. I don;t understand what happens in the culture here but we lose sight of someones humanity when hear of just the possibility of a disability or homelessness. If you don;t suddenly fit a mold you aren;t even in, you become more inhuman. It's incredibly scary to watch. The same mentality of World War 2 keeps hitting me. It's irrational at wartime. It's insane now. I've been literally hanging by a thread for more than a year. My economic status historically places me out of a social network or etiquette. No one with money can handle my reality and so here I am. My family disowned me after promising to help if I used my savings. They puled out and tried to blackmail me to be included in my healthcare decisions. It's obvious now they knew there were issues but decided to let me have a normal life. Whatever, I can;t change that but my naive nature left me blind to what again is obvious in hindsight. It's a miracle I made it this far. People are predatory. Anyway, I can tell people all this then it just sort of washes over and I start the process all over. One day, someone will hear me. It's soul crushing to be invisible. Despite all this, I'm somehow still here. It's really not that difficult. I just need one doctor to provide a free diagnosis. Or figure out a way to pay for it. Going through insurance or a disability office will take additional years. I've been doing this for years already. It's proving detrimental.

It comes down to politics. People don't want to pay taxes.
The side that won last time promised to reduce the size of government.
Which means cutting services.

An autism diagnosis for an adult is pretty much for the well off.
There are no services once you become an adult.
So why get a diagnosis? They say it will help get disability but most people on disability for autism got diagnosed as a kid and went straight to disability. I think most autistics who got on disability as an adult got it for something other than autism.

It will take years, but the only way this will change is if the politicians change and support the disabled.
I don't expect much in a country led by a President who mocks the disabled.

Have you called the various children's autism clinics? Some will work with adults. Also, ask how they diagnose adults. An expense test may not be necessary if you've got records from childhood &/or friends/relatives from childhood that would be willing to fill out a questionnaire or do a phone interview about your behaviors from then. This may be much cheaper than the testing route.Most are going to have waiting lists, so try to get on to more than one. If they don't take adults, ask for their recommendation on where to call next. Are you able to go immediately if they call? If so, tell them that when you get on the wait list. Let them know you could take a short notice appointment due to a cancellation.

I was diagnosed at a children's clinic by interview as an adult in my late 20s. My mom kept extensive records of my baby & toddler development and all my report cards. She actually refused to fill out the paperwork & attached copies of the records instead. My husband went with me to my diagnostic interview and did some interpreting of the questions. He interjected a few times to point out behaviors or things I hadn't thought of or didn't think applied to the question asked. (& he's actually the one who figured it out in the first place!)