Adult AS Provision: Mini-Survey

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Im currently investigating the status of support services in place to help aspies who are "late diagnosed". I would appreciate if you could complete the following questions. Many thanks.

1. Age?
2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?
3. What, if any, services do you use to help support your AS or autism?
4. If you dont use services at the moment, how do you cope in the meantime?
5. If you dont feel you need assistance, why?
6. If money was no object, what services would you like to see setup in the future?

I will answer although you don't specify if you want responses only from those who have a Dx vs. those who are self-diagnosed but are quite certain they have AS.

I am self-diagnosed because finding someone local who is qualified to Dx AS in adults has proven fruitless.

1. Age?

41

2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?

Yes. The focus is all on the identification and and Dx of AS for children. I don't think services for parents is a bias issue as the parents of children with AS need resources. I'm not sure what they have for career development for children with AS. For adults with AS, just getting a Dx is a mountain to overcome.

3. What, if any, services do you use to help support your AS or autism?

None. Not that there really are any services I know of for adults with AS.

4. If you dont use services at the moment, how do you cope in the meantime?

I've been trying to adapt to AS my whole life. It wasn't until just over a year ago I learned about AS and realized it reflected everything I've struggled with my whole life. Just knowing about AS, its symptoms and how it affect people who have it has empowered me to more effectively adapt and cope with it than before I knew about AS.

5. If you dont feel you need assistance, why?

Mostly, my AS is not severe enough that it's "obvious" to everyone. I was always considered "weird" but by the time AS was even recognized in the USA, I was about 25. I went through enough pain and growth to adapt to some of the worst issues I had. I forced myself to keep trying to be better. I'm not sure what "assistance" would really benefit me. At most, I'd like people to be more understanding about why I'm so "weird," but the other symptoms of my AS aren't so prominent that I'm not able to repress them in public.

6. If money was no object, what services would you like to see setup in the future?

I'd like to see diagnosis services available for everyone at reasonable cost. I'd like to see more effective public education about AS so that we aren't just "those weird people" but we're people who have a lot more to offer than we're given credit for.

Im 47

I agree with the above only to add

I cope because there isn't much alternative- just one day at a time

As for services, notmental health services who are not trained to understand our behaviour and this leads to innappropriate diagnosis and treatment.

Regional diagnostic centres and short term services such as specially trained occupational therapists who can help us find our own survival strategies in areas where we are struggling. More of a learning process than treatment.

1. 46. Four months ago.

2. Yes. I believe that the assumption is often that as adults we should be adjusted to it and can cope with it all.

3. I have support with outpatient mental health. My doctor is just now taking me off of all of my medications and I am beginning to see a therapist, but my therapist said that therapy may not even be beneficial for me. We'll giving it a go though. He will try to get me into an anxiety group soon, which may be more helpful.

4. Not applicable.

5. I don't think I really need assistance myself, per se, but I just like having someone to talk to in order to better cope with the world.

6. All that I would like to have, I think, is an adult Asperger's group to share experiences, and social and coping skills.

1. 34

2. Yes, as an adult with AS, I feel totally invisible to organizations that are supposed to help people with ASDs. Part of it is that don't seem to care, part of it is that they don't know how to help, and also they simply do have services in place to assist us (I'm mainly talking about career development). At the same time, I have heard from parents who also don't feel these organization are helpful to their children on the spectrum.

3. None, there aren't any.

4. I'm out of work. That' really the only thing I need help with.

5. I need assistance getting employment.

6. A career center that would actually work with employers and educate them on the strength of people with AS and HFA and work to match candidates with employers.

Last edited by OutlawSteph on 13 Aug 2010, 12:10 pm, edited 1 time in total.

1. Age?

Self-assessed and "confirmed" here at 59, now 60.

2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?

No, I usually depend more upon intellect than emotion.

3. What, if any, services do you use to help support your AS or autism?

My AS continues on just fine without needing any support.

4. If you dont use services at the moment, how do you cope in the meantime?

I presently get a "Supplemental Nutrition Assistance Program" ("food stamp") allowance, and I have applied to the SSA for "early retirement with disability".

5. If you dont feel you need assistance, why?

Does not apply.

6. If money was no object, what services would you like to see setup in the future?

Education for people who do not know how to deal with autism.

1. Age?
43

2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?

This is a global community, think beyond borders. I don't know (to answer the question)

3. What, if any, services do you use to help support your AS or autism?

I am currently lucky enough to find my own AS solutions - like using GPS, Street View, friends, retiring early

4. If you don't use services at the moment, how do you cope in the meantime?

Finding day to day life increasingly hard, hence joining here to find out what may be available in support.
I take time out to recharge my batteries. But this isn't understood by partner or colleagues sometimes.

5. If you dont feel you need assistance, why?

I think I increasingly do need some help.

6. If money was no object, what services would you like to see setup in the future?

Drop in centres. Places of refuge where you could checkin for days or weeks when you felt you needed a safe place to stay. Along the lines of Backpacker Hostel, but quiet! With ppl to help you access/find other services available.

37



yes.
agree with zer0netgain. trouble finding appropriate services to even get diagnosed.




job placement.

and money is an issue. no job, no insurance. no diagnosis. not sure where to seek help from here.

currently i am seeing a therapist at a clinic with sliding-scale fees. not trained to deal with AS patients but we have found a way to work with each other.

1. 41 (diagnosed at the age of 26)

2. Yes. Most services are geered at children.

3. Counseling. Occasionally anxiety meds. alcohol

4. n/a

5. n/a

6. Friends

1. Age?

46

2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?

It's my impression that there's more focus on children, but I don't know first hand.

3. What, if any, services do you use to help support your AS or autism?

None. The only help I get is financial help from my parents, but that's mainly because I have CFS, which is primarily what keeps me from being able to work.

4. If you dont use services at the moment, how do you cope in the meantime?

Not very well. I feel isolated and socially incompetent.

5. If you dont feel you need assistance, why?

I would like some assistance in figuring out how to cope, such as competent therapy. The only therapy I can get free with my insurance has been no help, though meds have helped quite a bit with my depression and anxiety.

6. If money was no object, what services would you like to see setup in the future?

The AS specialist who diagnosed me would probably be helpful, but I can't afford to pay $300 a session. She also recommended a social skills group but that costs $900. So the services are there, at least in the big city where I live, but they are out of reach financially.

1. Age?
19
2. Do you feel there is a national bias towards children/parents/carers, as opposed to adult diagnosed?
Kind of. All the literature (at least all I found) was geared toward children, and I imagine that symptoms in childhood are different than in adulthood...many similarities, but some differences. I've seen some people here point out that many of the symptoms you see listed on the internet are for children's diagnosis.
3. What, if any, services do you use to help support your AS or autism?
I've seen a psychologist & psychiatrist for anxiety, but not strictly AS related things. I use the disability office at school and vocational rehabilitation, but I was directed to those for medical reasons, really.
4. If you dont use services at the moment, how do you cope in the meantime?
I don't feel that I have debilitating symptoms, I'm just different from other people. Now that I'm becoming more aware of those differences it helps with the process.
5. If you dont feel you need assistance, why?
^Above. And I don't know what kind of assistance I would use anyway.
6. If money was no object, what services would you like to see setup in the future?
I just think it would be nice if there was more AS/autism awareness. I'm seeing it more in the media, but not enough detail or characters with symptoms that are misleading.