Getting services-Need help/advice

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Hello. I finally got my ADOS test results back. Yes, I am on the spectrum. My evaluator mentioned a place that helps fund treatment for developmental disabilities. They will pay for social skills classes, therapy, so on.

This place is called the Regional Center in Los Angeles. The issue is apparently they need documentation of your autism BEFORE you turned 18. My evaluator was sure to mention to try and avoid any documents that mention Bipolar or a personality disorder, even though he suspects I have Bipolar type I in conjunction with ASD. Apparently, they will really try to say you're not autistic, and your symptoms can be better explained by Bipolar, Anxiety, etc.

The issue is that's all I have! I have had extensive mental health treatment since age 11. Therapists, counselors, psychiatrists, case managers, mental hospitals, a residential treatment facility, a partial hospitalization program (twice), and a group home. I don't know if they documented my extreme lack of socialization or not, but I doubt it. They were more concentrated on my "attitude" and correcting it. A lot of diagnosises were given to me. I was always put on anti-psychotics, even though I only hallucinated from lack of sleep for days. I was told that they will question why I didn't get services before 18, do a whole other evaluation on me, and will need to contact my family.

My evaluator said to try and give them documentation from mental health professionals, MDs, and my school. I barely went to school. They get lawsuits all of the time for breaking laws, and then they purposely "lose" troubled childrens' paperwork (including mine). They even gave me my ORIGINAL transcript when I was 17, and they have no records of me going through 9th grade twice even though I did. I'm not sure I have records of attending there at all anymore. It was that bad. I was almost put in special ed due to my emotional/focusing problems, but I doubt they document things like that unless you were involved.

I barely even left my room for years during my teenage years. When I was little, autism was missed because back then, high functioning females weren't diagnosed. I was just regarded by everyone as "shy" or quiet. As I got older, mental health professionals regarded me as a trouble patient due to questioning their authority and being too "arrogant".

Do you guys think telling them this will be enough? I'm originally from PA, and we didn't have services like that, so I was told to explain that to them. I'm only 22, but I can't hold down a job. I'm planning on going to school, but I know it will be hard. I want more than anything to be able to go through school somewhat OK, and this includes interacting with people. According to my ADOS test, I have a lot of things to work on (no eye contact at all, no body language, extreme one sided conversations). I can't afford the help on my own.

I'm glad you finally got this worked out and now have it on record.

As for documentation, you might want to try this-

Get someone (a professional) who's up to speed on the diagnosis (preferably the person who diagnosed you) to compose a simple letter that says this-

'This person is dealing with an Autism Spectrum Disorder. Such individuals do not develop autism after reaching maturity. She has been autistic her entire life.'

I don't see what more they'd need in the way of documentation.

I mentioned something like that, but he said that they need proof to differentiate between people who are actually autistic and people who appear to be autistic but actually have something different and developed whatever it is later in life.

I understand one needs to be born with it, but it seems discriminatory to people who didn't/couldn't access services. My evaluator didn't require previous documentation because he went off my own history and recollection of childhood. He said if they try to deny me, there is another place that will give me a free lawyer to fight for services to help me.

Do you think I should even attempt to get other documentation? So far, I can't think of anything that specifically said things like "odd, peculiar, weird". Several of my doctors used to mention extreme anti-social behaviors, along with lack of eye contact and being "eccentric". However, they said my eye contact was due to lying, and my communication problems were "manipulation". As far as I know, none of that was actually documented.

Wait. Was this the only diagnostic test you were given?

Also, I'm confused about why you are going to a Regional Center after getting your test results. Did you not know about the Regional Centers before your evaluation? They would have evaluated you for free.

Your post caught my attention because I am currently being served by one of the Regional Centers (one further up north in CA). When they did my intake, I told them that I had been diagnosed with a PD on two separate occasions (schizoid PD), and it wasn't a problem at all. The psychologist said that a phone call from my mom about my childhood would be very helpful, but not absolutely necessary – but maybe that is because they did my evaluation, rather than relying on an outside evaluation. Hmm.

So I don't know if the center down in LA is just run differently, or the person who referred you has no idea what he is talking about, or it's different for you because you had an outside evaluation and a very different PD diagnosis, or some combination of those.

Thanks for the advice, starkid!

I am very tired, so maybe I misinterpreted a few things, but I do know he definitely said to bring documents.

I had NO idea about this place at ALL! I paid $500 for my evaluation from a non-profit. I don't expect them to fully rely on those results. Upon reading the website, they do their own evaluations.

I took the ADOS test, a very long interview, and both my husband and I filled out a questionnaire related to things like communication, sensory issues, speech, so on. My whole evaluation was recorded. We went over the results very carefully.

I was never formally diagnosed, but it's been suggested and put in notes about Borderline Personality Disorder. If you know the stigma around that, it might make sense on why that would possibly be an issue.

Well, geez, now I'm more confused. I wish I found this place before hand, but better late than never. I'm happy to hear it wasn't a problem with you getting diagnosed. Perhaps my exhaustion is making me more paranoid than normal? He mentioned that they will probably question me because I had no services before 18. They really try hard to make sure you actually have autism and not something else that happened suddenly, which is a good thing to me. He did also say he thinks I have a solid case. Since I've already been diagnosed once, I feel fine doing more testing with them.

I'm hoping this isn't the case, but I hope this isn't related to gender. As in, maybe people have a tenancy to dismiss higher functioning females as just overly emotional and type A. The place seems very good and specialized, though. Is the one in Northern California treating you well?

Last edited by bleh12345 on 04 Feb 2014, 8:33 pm, edited 1 time in total.

Yes. My only complaints are that they seem to process things very slowly, and the evaluation didn't seem thorough enough to me.

I see. I think a lot of places are like that, unfortunately. I have a slight update. I just called, and they said they will get someone back to me. I think it's because they are closing right now. So, I asked about the eligibility. The person said it depends, sometimes they do it themselves, sometimes they don't. Since you had an easier time than I would have thought, perhaps I should just do what Sethno said and leave it at that!

I don't know if this helps guys, but my evaluator brought up the personality disorder thing in my actual evaluation since it came up in the past. He concluded that it's far more likely that it's a combination of autism and my abusive childhood rather than a personality disorder. This might help my case further, I think. He wrote it down on the results.

How are things going for you? I've recently found out that RC only serve people who are rather severely affected; there is a "substantial disability" requirement that most diagnosed with Asperger's Syndrome will not meet. And I think now it's probably better that you received your evaluation outside their organization, because of how cursory and ill-adapted my evaluation was. They don't seem to evaluate for ASD so much as they evaluate for a certain level of severity, and it's irresponsible for them to tell people they "don't have autism" just because they don't fit their definition of severity.

Thanks for asking how things went. Well, the person who did my ADOS testing told me he thinks I have a good case, and he knows about the severity requirement. I, too, believe it's messed up, however, I think it might be because they only have so much funding, and they want to help the most severe.

The cut off scores on the ADOS test for ASD is a 7, I believe. Anything under that is usually considered not autistic. I scored an 11. I can't hold a job, I'm unable to make friends physically (can only do it sometimes via internet), do not go outside, and have emotional regulation problems due to some of my traits and other things. I think this would be classified as severe enough for them.

The issue is I feel like I've been left in the dust. The person who evaluated me charges, I think, over $100 per therapy session, and even more for social skills classes, even though on their web site, they state they have sliding scale fees for poorer people. Even though I was willing to pay, he referred me to the regional center. He was supposed to refer me to psychiatrists who have experience with autistic people because of my depression and ADHD, but just kind of said to call around for someone. He offered no classes. He explained that if the regional center denies me, there is a place that can give me a free lawyer. It was called the "family resource center".

So, naturally, I called the regional center. By the way, he couldn't even give me the number. I had to look this crap up online. I'm pretty intelligent, but California is stressful in regards to services and benefits, so I was freaking out. I first called the wrong place for my area, but I had no idea. It didn't even matter, because even though they said they would get back to me, they never did after TWO weeks. That was a month ago, and they still never called back. I accidentally called another wrong center for my region, and the lady was very nice and redirected me to the proper one. I called SO MANY TIMES. There was no answering machine. Finally, after a few days of calling, I got an answering machine. Left a lot of messages, and nothing. I looked up the "family resource center" and came across a number. It was a lady who sounded like she was in her own home on a cell phone or something. I was trying to explain I was directed here in case something happens with my application and about the whole lawyer thing. I don't think she understood what I meant, and she kept asking if I was with the regional center. It turns out to get services from this family resource place, I need to be accepted by the regional center.

So, here I am. I have no services. I want to apply for disability, but since I'm going to school full time in the Fall, I'm afraid I won't receive it. It also makes me nervous to even contact these types of people, as most are rude, extroverted, don't listen, and do not understand how I communicate. I feel very stuck and left behind. Also, I'm angry that the person who evaluated me told me to try and watch movies to understand body language, and kind of left me without any resources. I'm stuck again, and all I can hope for is the ability to be able to fake things better in the future, or else I will never have a decent job.

I think the RCs maybe have very few employees. The only employee I ever interacted with there was the receptionist; the psychologist who did my assessment was a contractor, and the psychologist who took my history and gathered records was a contractor. Every time I went, the place seemed very empty.

It seems like it. It's OK. I'm managing OK on my own I guess, but I could have used some help. I'm just afraid of what my future will be like if I can't even do job interviews.

Starkid, were you diagnosed with a PD before your 18th birthday? I'm wondering how you were able to get services even though you're an adult. I would like to be serviced by a regional center and not have to pay $500 (I'm in the same boat as OP) but it's seeming like the only option.

No.



The only services they've given me are the free evaluation. The psychologist they contracted with decided that I didn't meet criteria for an ASD, so my case was closed after that, although they gave me the option to appeal.

I didn't have to do much to get the evaluation. I just called them up and said that I want to be evaluated, they asked me a bunch of questions, and decided that it seemed possible that I had it.

Obstinate, what county are you located at in (I'm assuming) California? I can try my best to look up some sort of non-profit for you.

Starkid, did the psychologist administer an ADOS test among other types of tests? I was wondering because it's possible you are higher functioning, and even with the ADOS test, lack of experience in diagnosing higher functioning people can screw up peoples' results. The person I went to was experienced with a very large range of ages and functioning levels. As we know now, the regional center only accepts people they dub with significant difficulties. I'm wondering if the psychologist didn't have a bias for lower functioning people and missed you. Have you thought about a second opinion?

Bleh, I'm located in LA County.

I messaged you some information. I'm going to try and locate more, but it might take a week or two. I was having trouble finding resources myself. I will let you know when anything comes up.

By the way, if you need people to talk to/interact with, try this link. They have groups for people with ASD, run by people with ASD. They are mostly socializing groups.