Autistic and no services, no help?

Post Reply New Topic

Oh gosh.

I have no idea what to do in case I don't get the services anymore now.

I feel it's totally needed right now. I learnt a lot about AS and HFA in the past years, but now I'm faced with a new challenge because I'm back facing hard, uncomfortable reality and my deficits and limits.

I get services so far from the youth office, an ASD therapy. I'm actually too old (over 18 ) and too intelligent (not mentally ret*d) to receive any services.

You know... kind of like a hole in the law. They didn't consider AS or non-retarded classical autism.

I got services until the age of 21 because a shiny new law of just last year allowed it.

And there is the possibility to receive services beyond that for another 4-6 years.

In extremely exceptional cases.

If the youth office doesn't grant me services, nobody will according to current information. So... will they? I will not know until the very moment when my services run out.

And all the time I'm thinking...

How do others manage?

I'm not the only disabled AS/HFA person over 20 who needs services that may or may not be granted am I?

Is there a local federal or state disability office where you live? You could ask a professional the next time you see one.

Here in Oz, AS grants you the same services as LFA because it's based on ability, rather than what the label says (as we all know, someone with AS can be more disabled than someone with LFA, it's just not in the majority of cases).

Sadly, no, as far as I know of.

Services including therapy, financial help, educational assistances for the disabled are granted by either social or youth welfare offices depending on IQ. If I were to try the social welfare office they'd tell me they're not responsible because of my IQ.

I will however ask that exactly next time I get the chance. Just to be sure and everything.

I do not know, if this is helpful and, which country you live in but.... maybe you could ask people on a forum like site as this one in your own language for info about some of the questions you have. Maybe folks there know some of the answers.

Thank you, but that doesn't work either. Most adults with AS/HFA in my country (Germany) do not receive therapy/do not want it or if they do receive psychotherapy, they do not know that ASD therapy (for kids) exists because they cannot get it.

What's with the IQ thingy?

I mean, there's many, many adult onset disabilities out there which affect someone's ability to work/function that don't affect the cognitive ability of the person majorly (MS, Schizophrenia, OCD, etcetera).

Sadly, no one cares about the Aspies/Autistics. I learned this harsh lesson two years ago.

I believe the IQ has something to do with how a person learns. If the IQ is average to high intelligent, that means a person is able to learn the skills to be independent and to do things on their own. Example if a person lives with their parents and might have never learned the skills they need for independence, because they have the cognitive ability to learn at the rate as everyone else who is an adult, the services assume they can do it without help.
If a person who has mental retardation may not be able to fully learn and/or may be unable to learn at the rate of someone their own age. That means if an Adult has mental retardation,depending on how low the IQ is, they may not be able to learn and/or stop learning skills for up to a certain age group. Because of the mental retardation, the adult may have stopped learning skills for up to a certain age, usually between infant-12 to 14 years, depending on the category of the mental retardation. There are different ways that mental retardation may affect an adult's ability to do things without assistance. there are mentally ret*d people who can be independent and/or live on their own, but with some supports. Unfortunately, if the mental retardation is accompanied and/or caused by a developmental disability, like Autism, the Autism might get in the way of the person's ability to function at the level they are. example if a person's IQ is 65(mild mental retardation), but do to the Autism, they might actually function as someone who has a much lower IQ.
Asperger's is a very catchy disability because it does not affect the learning, the disability(special needs) programs might not be good. In my area, they have the Day program and/or residential programs(usually for mentally ret*d and/or developmentally disabled who have cognitive issues). They also have an state run agency where a person with any disability that would not qualify for the "special" services(Aspergers, physically disabled, etc.) would go for a vocational assesment and they would go over your strengths and weaknesses and all of the other "qualities" a person may have and then help you find a job. If you end up with a career choice that requires college, then they will pay for you to go. The second option is best, I think, for a person with Asperger's. When you do this program a psychotherapist/counselor is also needed, and will probably be needed for life-long, even after you get your career, so that you can have "emotional" support for any "bumps" in the road called life.
Good luck with everything.

I think financial aids and services to Aspies /Highly functional autistics is something dumb and stupid and those AS people would remain lazy because they were used on these aids. That's why you're wondering what would happen to you if they cut the services to you Yes aspies do have difficulties , but not as severe as being unable to work or to learn how to work.

You're an adult, and I don't think you're a low functional autistic so you can make your own money damn it!

Those aids should go the people who really need it: The classic autistics , the children with cancer , the single mothers , Africa ..... etc

Stop being a burden on your government like that.

^
That's a really nice nuanced and helping opinion, LePetitPrince. How can you be the judge here? Maybe she is actually asking for some help (in her country) to find a suitable job?

And Sora, we're not really handicapped in a obvious, clear noticeable way but nevertheless with impairments that can be really impairing enough to function properly, as, lets say, society dictates. Maybe step by step towards a (PT) suitable job is a good thing. I've read some of your posts in the past and you are a very clever young lady.... try to find something that fits your interests maybe. Take your time and ask for help (we tend to not do that enough). The combination interests and friendly, a bit understanding, people in a job setting could be uplifting and gives meaning in life. But take it slowly, one step at the time. I tend to go in overdrive, bump my head and fall. Piecemeal is best, I learned the hard way but hey.... I'm absolutely sure you also can do it (very good probably).

But maybe you had other questions in mind and this all isn't helping. Ask....

I forgot to explain that I guess.

These disorders (and others) are, for better or for worse, usually covered by the insurance and treated by regular psychotherapy as they have been around for a longer time than autism. A psychotherapist where I live wouldn't understand autistic symptoms and difficulties.

Also, insurances do not pay for ASD therapies.



Thank you. I'd probably fall through the cracks in that system too, because rather than help with finding a job which I could, I need therapy to cope with the autistic symptoms.



I can actually work just fine, with the occasional meltdown, the overloads, routines, social miscommunication. I do work right now too.

I require therapy to learn more basic things just like the other autistic people in my area. I do not require financial services besides someone paying for the therapy that I gain as much from as people with LF autism.



Thank you. That was really sweet.

I do not know what to do yet after this year of voluntary social work, I have lots of dreams and visions of which most are hard to impossible to reach because of several factors such as having little money and a bad school career because of the AS/HFA and AD(H)D. I often want too much, try to do too much and forget to consider my autism and what I special needs I have because of it which the leads to that I have a crying shutdown such as last Thursday at work or am absolutely unhappy because I can't do what everybody else can.

Your post reminded me of that I should look for a position that fits me as a whole, including my autism and shouldn't be embarrassed by myself for not managing to be average at times because achieving less when you're trying hard is OK because you're doing your best.

So now you just have to cope with the amount of money you make yourself without relying on the additional sums you get , that will make you prepared in case they cut it. Just a personal question, and you might respond by pm or you might choose not to respond: How severe your HFA is and how much is your IQ?

Sora,
sorry if have not understood-have read through posts over and over...what are the exact services that would be helped by?

The best way in to services,would be through Germanys' national autistic society [if there is one,but they will want funding off the social services so that will be another issue],and social services.
they also base learning disability services [in social services] on IQ and how disabled the person is,eg,in the UK-are required to be MR and have high support needs including personal care to get in the services and get a social worker,they dont do much if already live in care, but they can get access to a lot of services,either in the LD team or specialist,they would visit someone who lives on their own a lot more.

Does the local social services not have a mental health department? some people get help that way,when they have a mental illness as well.
There are also CPNs [community pyschiatric nurses],does Germany have them? they can help in similar ways to social workers,not sure if they have as much authority though,but they may be able to fight for funding for a local ASD service.

Go to local MP and complain about not getting support,if nothing gets sorted.

FWIW,those of us classed as having severe/lf autism also have to fight-we get services easily enough but not the right ones, social services/councils do not want to fund needed specialist autism care when they have their own unsuitable,unexperienced, unadapted learning disability services to dump us in instead.

I thought about that before too. The therapy is 5000 Euro for half a year but the therapy also requires the 'authorisation of an official agency to ' (meaning the youth or social welfare office which approves such therapies by paying them). Right now, I make 50-60 Euro a month though I am working 38,75 hours each week for all 4 weeks of the month. I couldn't pay that even if I were allowed to.



Don't worry about asking. I can't really give you a straight answer though? I'll be detailed then instead.

I'm dxed with AS despite that I don't meet the 'you must be normal in this and that' criteria and professionals said 'you could be HFA'. But it doesn't matter for services.

The symptoms that I have are mostly moderate I'd think, some severe (TOM, non-verbal abilities) except for special interest (non-existent) and language (mild. Often mess grammar and can't find words, sometimes can't talk that's all) I think because I can't relate to many things written on WP.

I have become extremely hf (in my region, not on WP funny enough) however due to lots of engagement of single people in the past, family, especially mom and in the recent years also due to therapy. You didn't ask, but I'm very happy with this and want to point out, because that is why I stayed in school even though I had to attended several and why I'm able to work rather well at the moment.

I scored differently on IQ tests, with performances of 135-140 to 70-75.



It's a bit complicated for Germany which is why explaining is hard. See below, I tried to explain.



Social services are pretty much synonyms with social welfare office here. So I guess there's little difference between the UK and Germany in that aspect?

We have something similar to the NAS, our and that's exactly where I get my therapy from. They have little centres scattered across the country where there are supporters and therapies. They help with every form of autism possible usually.

If you get the therapy, it is not really specialised in your functioning-label or dx, but you'd be offered the same therapy at the start as someone with more hf/lf autism and only then they see what you can do, what you can't do and so on. Mine's lots of talking, because I need someone to explain things to me and how to do them and prefer to try everything myself afterwards.

This includes on how to use the phone, practice a smile, learning about eye-contact, cooking, learning not coming to late, what to say when you greet people or how to manage after meltdowns (that's what I need) as well as such things as how to apply for a job (but I'm good at these 'big' things and mostly fail at the basic things).



I'm not sure. I haven't heard this before and will look into it. Thank you KOR!



I need a lot of help with that, but I would! They just forgot about non-MR IQ when they made the laws and that can't be right.



Ah, yes, I suppose that is true also. Treatment for autism can just be so different from regular LD/MR support. If anybody understood about autism, they'd treat us all appropriately. I bet it would save them a lot of money too if they just had already established good system for us all on the spectrum.

I am not sure what to write. I am in a similar position though. I do not seem as if I would need services but I do. My government helps subsidise counselling and some other services, but the kind of therapy I want wont be subsidised so (eek) my mother will be paying. I guess it will be up to me to take it seriously and make the best of such therapy. I know I need to make a lot of changes to my life and I now realise that my life needs to be designed differently to other lives.

I think you could keep looking and perhaps you will find some service which you qualify for. I think they should help us, aspies and autistics have the potential to be very productive given the correct support. It pays off for everyone involved.