Rejected from local autistic community and assistance

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Hello,

I need some advice regarding my current situation.

My therapist and my behavioural specialist MD both have given me a diagnosis of Aspergers which we have used to move forward in my therapy and treatment for severe depression and anxiety for the past couple of years. It was from their advice that I tried to connect with the local social services for persons with disabilities to start an adult Asperger meet up. The Parents of ASD children met up and had a meeting, which was attended by myself and one other adult.

The adult meetup was a total failure as no one showed up. However the organizer from social services seemed very supportive of my questions about what services were available and what my needs are (I live with my parents and at the time had no job).

However, after my initial application for services she never followed up with me for months. I was dropped from the contacts of the parental group and they continued to meet and organize without so much as a note to me.

Months later, I was encouraged by my therapist to re contact them and try to find out where my case was, if they were going forward. I was basically told that because I had no diagnosis from my high school or previous to my diagnosis as an adult that they couldn't do much for me. They asked for a letter from my therapist, which I assume she sent because she said she was willing to do so.

I got official paperwork that basically said I was ineligible for services due to having no support of an aspergers diagnosis, despite having the diagnosis on my medical record from my dr, therapist, and a personal letter from my therapist. What else do they want? No, I don't have a diagnosis or supports from my school because I was going alone with no clue and just struggled through. They didn't even have an autism spectrum widely on the radar of pediatricians at the time I was growing up in the 80s 90s... I have no idea what they expect me to do.

My question is basically, should I fight the decision and appeal? They have a process to appeal and I have been assigned a worker to assist if I want to appeal. I feel as thought I have struggled thru this long, maybe I don't need the services. But I also feel as thought my disabilities are invisible and I am being written off for being "too functional" although my ability to function is highly dependent on routines, any of which could plummet out of my control at any moment and send me back to a place where I am unable to leave the house let alone work. If it would help any other autistic adult who is diagnosed late in life, I think it is worth fighting for, to have my diagnosis recognized and validated and not to just be cast aside offhandedly (which is how I feel because the director of the center never actually met with me in person, or interviewed me face to face or heard details of my challenges.)

I could let it go and probably go along for awhile until something changes and worry that I am on my own, or I could fight it (which I consider scary and potentially draining).

I don't know what to do.

If it feels right to fight it, and it sounds like you do want to fight it, please try to take a deep zen breath and be open to the idea, okay, fight the good fight, win, lose, or draw, you've done your part, and yes, increased the chance that future adults on the Spectrum will be taken seriously.

And if possible, try and get someone to advocate on your behalf and help with some of the leg work. This will make your chances better and hopefully the bureaucrats will feel yhey need to give your case more of a real look. And an advocate will also make the whole process less energy draining.*

*and by advocate, I mean someone willing to do some of the work and go with you to meetings, and not merely giving advice.

I think you should find an advocate to help you. I don't understand how they can say that you don't have an Asperger's diagnosis when you have one from an MD. I am really only familiar with how these things work as related to kids, though.

I am sure someone here can tell you what to do. It is not unheard of that people get diagnosed as an adult. I think the people you are talking about are either exceedingly ignorant, or they are looking for reasons to deny services.

by all means, appeal.

my heart says appeal, fight - the rest of me takes a BIG step back and says - be cautious, taking care of yourself is a first priority - these people don't sound like the kind of people I would want to engage with at all.

It could be the standard, unofficial method of rationing state services/dollars -- make the person re-apply 5 times, hoping that they'll give up before the 5th attempt. I've recently been reminded of this tactic w.r.t. my medicare premiums suddenly not being covered any more.

I am wondering the background of your therapist? There are people out there who may call themselves a "therapist" who may not be legally recognized for providing diagnoses. Although that would not explain why your MD's diagnosis was not recognized...

If you don't appeal you won't really get resolution to this. You'll still feel rejected by these people, and (just a hunch, could be wrong), at some future juncture, you'll revisit the idea of appealing. At least, if you appeal now, you'll get closure if it doesn't work out - and possibly a great opportunity if it does.

You may also want to find out why you got rejected by the local autism group. You could just show up next time and ask the group (parents) for advice - "I'm on the spectrum and noticed I was taken off the contacts list for this group. I'm coming here just to find out what resources there are for adults with autism and if there is a group that is willing to help. Rejection is something I experience on a regular basis and I don't want to come here if I don't fit in - just wondering if you know of any communities where I'll be welcomed?" Boy, if you say that, that will put them on the spot without your being accusatory. They may be more accepting and helpful, and if you still don't feel comfortable, you don't have to return. But you'll get some sort of closure there also. Good luck!

I respectfully disagree with tjr1243. If you just show up at the next meeting, it may emotionally feel to them like you are crashing the meeting. It sounds like these people simply have a mindset of 'autism spectrum must be diagnosed in childhood' (as wrong as we know that is).

Any chance you might be able to find an advocate elsewhere in your state, maybe ASAN, maybe someone else? Maybe even an advocate chomping at the bit to take on this case, and you can then be in the more relaxed position and really the more fun position of being a moderate. And reminding your advocate as necessary, no, this is their sincere mindset, as mistaken as we know it to be.

If you represent yourself, it's kind of this thing where they're trying to brush you off and hope that you'll go away. With an advocate, that's off the table. Your case is not going anywhere. They kind of have to take an honest look at it and an honest reappraisal. And they're also more likely to be on their best behavior because of the fair witness aspect of having an advocate.

*and take a page from Ronald Reagan. You're still in charge, but delegate rather broadly.

My apologies if I am misunderstanding the concern, but it sounds like this group has a focus on working with children and no volume of (newly diagnosed or 'long term' diagnosed) adults seeking support/services.

I am going for diagnosis on Monday - and best I can tell from research - there really aren't support systems out there for adults that have been dealing with this for decades (I am in my 40s). Working with children on the spectrum is COMPLETELY different than working with adults. Children are still impressionable and therapies/strategies are WAY different for supporting them than in helping adults unwind and redo things they have thought as "common sense" their entire lives.

Perhaps inquire with a life coach as opposed to looking for general community support?