Services for adults

[Sophist]

Okay, so it's looking more and more likely that Manny will get the director position at the local autism center here in Louisville, KY. One thing he and I were discussing was how to make this center something new, something special. We're such a small group so to lead the way in research is a bit of a pipe dream; for instance, we haven't the money nor the staff to compete with the MIND Institute. But one thing we could do would be to try to make this center one of the eminent centers in treatment. In order to achieve this, amongst other ideas, one thing that is sticking with us is to improve services for autistic adults, since services are, shall we say, virtually nonexistent.

I've posted a similar thread on WP to gather responses, but I'd love for Gestalt to give feedback. As an autistic adult, as a parent of, friend of, etc., what kinds of services would you like to see available in your local communities to help those adults best achieve their potential and live fulfilling lives? Especially something that a center, such as our autism center, might be able to provide for the community. We'd like to take some of these suggestions and try to apply them to Louisville. It would be great if we could lead the way such that other centers would follow suit and start providing similar services.

Ideas? Personal stories? Etc.?

[goddessoflubbock]

I know the Burkhart Center here does a great job. They help adults with life skills - riding the bus, paying bills, etc. They also help with job searches, interview skills, things to help people achieve independence.

[Sophist]

Are there any kinds of medically related stuff that you can think of that'd be good?

[goddessoflubbock]

Coping skills, that kind of thing? Otherwise I'm not sure...

[renaeden]

How to make doctor appointments, how to be responsible for your meds (big one for me because when I was first taking meds not so long ago, I would just take whatever was given to me, no questions asked. I regret that now), establishing routines for taking meds on time, stuff like that.

[Sophist]

If you guys don't mind, I'm taking notes on suggestions. It'll be anonymous though.

[SomethingElse]

Advocacy/support for medical appointments, help making and keeping appointments.

[Sophist]

Going to copy and paste an additional question I asked on WP:

Are there aspects of medical treatment, either primary or specialized, which you've had in the past that could've better accommodated your autism? For example, approaches which a doctor used, either in bedside manner or application of treatments, that made treatment for you more difficult. Were there conditions that were entirely missed in part because of your autism, such as painful conditions, GI problems, dental issues? Were there treatments you avoided because of fear of medical intervention? (These can also include mental health issues.)

Thanks.

[SomethingElse]

I dislike being touched, so having examinations is quite upsetting for me, and I'm also usually confused as to whether I have to remove clothes and if so which ones, so I think it's important that things like that are explained in particular detail and with some pre-warning (so, an autistic patient might be offered a little waiting time to get to grips with what is about to happen and can choose whether they are happy for the Dr to go ahead?).

Also things like ensuring that if a procedure is booked for another time, it is made clear to the autistic patient who the Dr will be (and making sure that autistic patients get an option or are consistently able to see the same Dr instead of being booked in with different Drs for visits).

I've often found that, due to my lack of expression and difficulty discussing my thoughts/feelings, I'm often dismissed when it comes to mental health issues, and so would be concerned that for less expressive autistic individuals who struggle to answer mental health questions, we might be overlooked/neglected/dismissed. I'm not sure if other autistic people do this, but because I have no way of measuring my own feelings/thoughts against other people's (so scales from 1-10 are difficult to answer, for example), and because I get quite uncomfortable and embarrassed by personal things being brought up in front of strangers (even professionals) I apparently 'play down' my issues. There's also the problem that you will likely have appointments when you aren't directly experiencing the worst (so if you are suffering from very bad periods of depression and suicidal thoughts, you might go to the Dr and be relatively okay - in which case I find it very difficult to 'lie' about how bad I am feeling because I am not feeling that bad at that very moment...

There are also quite a lot of health/mental health questions that are difficult to answer due to lack of clarity or context. I can't think of examples, but it would be nice if Drs were more clear about what they wanted answers for (and sometimes possibly why).

[Sophist]

I definitely concur about the vagueness of many mental health questionnaires.

[goddessoflubbock]

Most obviously doctors who have a deep understanding of autism and it's affect on medical care.

DS had a broken finger back in 5th grade from flag football in gym. At the ER I get aside with the dr first and gave him a quick rundown that DS won't converse, doesn't seem to acknowledge or feel pain in a typical sense and no excessive touching (patting his back, etc.). Of course he did the complete opposite and said it's not broken bc it doesnt hurt :/. I pushed for an X-ray bc it was broken...

[adhocisadirtyword]

I just want to find a doctor who will take the time to talk to me, but I don't think that is an autism-specific request. It's very difficult to jam everything I need to discuss into a 10 minute appt and have the dr pick what they think is the most important topic.

It may be more frustrating for us though than for most people. I concur with having a list of autism-friendly doctors, the insurances they accept, their locations and nearby public transportation hubs. And it might make sense for this organization to contact the doctor in advance to let them know about this person and their particular form of autism. If the person agrees to share that information, of course.

I work in Disease Management and we can and do communicate medical/social information with the doctors when patients give their permission. It's part of our Referral process and our Health Alert process.

I would also add classes on nutrition (especially foods that may help with attention and sensory issues [thinking Omega 3s and Vitamin Bs here]), saving money, interviewing skills, small talk workshops, and sex ed. These are things that people outside of the autism community can benefit from, but in my mind, these would more detailed and specifc than most people would like to get into.

You may also want to provide assistance in communicating with local businesses, like social services, banks and grocery stores. If your members are disabled by autism enough that they're on disability, they are likely not living in a good area, and likely do not have access to good grocery stores with healthy and inexpensive product offerings.

I'm cheap so I choose to live in a bad area, but I have to drive 6 miles to a decent grocery store. The ones near me are terrible because they know they're in a bad area. I've been working with them to improve their produce and their product offerings because I am forced to shop there from time to time.

Now my good one is getting rid of some of my favorite products and replacing them with the "diet" form of them. I had to drive 20 miles to the nearest one who sells cranberry juice without extra sugar or sugar subtitute. So I get to negotiate with two stores now.

Maybe keep a list of community activities and events or cool stores/areas that other members like. It might encourage them to get out of the house more if they knew what was available to them. And community gatherings at your center that are autism-friendly would be fantastic.

Sorry if I repeated any other suggestions.

[SomethingElse]

I just want to find a doctor who will take the time to talk to me, but I don't think that is an autism-specific request. It's very difficult to jam everything I need to discuss into a 10 minute appt and have the dr pick what they think is the most important topic.

I think you're supposed to have one appointment for one problem, so perhaps you could make more than one appointment if you need more time to discuss more issues?

[adhocisadirtyword]

I just want to find a doctor who will take the time to talk to me, but I don't think that is an autism-specific request. It's very difficult to jam everything I need to discuss into a 10 minute appt and have the dr pick what they think is the most important topic.

I think you're supposed to have one appointment for one problem, so perhaps you could make more than one appointment if you need more time to discuss more issues?

That's an interesting suggestion, but I'm not sure that's the way it works here. Maybe that's an NIH thing? Here, I only go for an annual check up. This includes a pap, a review of any medication I'm taking and how it's working for me, a check up of my sciatica, things that people in my age group should start being looked at for, a skin cancer screening (because I'm painfully white), a breast exam, blood pressure, cholesterol, and every few years a new bone density scan (because mine is already low).

Some of this is specific to me and some of it is for everyone. I'm lucky if I can squeeze 15 minutes out of the doctor to do this and talk about any other concerns I have. And I'm relatively healthy (don't smoke/drink/and I'm a vegetarian).

On top of that, I feel like they're in such a rush that when we do discuss something, it never goes into enough detail. For example, my husband went in to get his eczema looked at and the doctor said, "Don't use soap." When we asked him what he meant by that, he just repeated himself and seemed in a rush to leave, so we let him go. What do you mean, "Don't use soap?" Do you mean, just use water, or what about natural cleansing products, can you give some suggestions on things we should look for? No - he just said "Don't use soap" and then wanted to leave. And of course, I couldn't think of a response in time in order to get him to give us more information.

I've started separating some things now just so I get more time. My sciatica is handled by an amazing chiro and my pap and breast exams are done by my midwives. So I just do the rest of it with a general medicine doctor.

[Sophist]

I don't know if this is a trend, adhoc, but maybe you could try to go to clinics which are also teaching clinics for residents. Residents usually give quite a bit of time, and because the doctors aren't necessarily so rushed, they may be more prone to give their time too. My gyno is like this, both he and the resident give me LOADS of time. So perhaps a university hospital clinic might be helpful?