Services for adults

[SomethingElse]

Oh, right. That sounds a bit different. Here you usually just go to the GP when you need something checked or you have a problem (unless you do have an ongoing thing that needs some monitoring). I know a lot of people tend to sort of 'store up' issues, or will go to the GP for one thing but bring up other little things. And I've heard that this is quite annoying for GPs because each thing should have its own appointment. Also, although we have appointment times, some people do tend to run over their time and so you'd usually be waiting a little bit in the surgery after your appointment time (need to get there early to go in late!). My GPs have so far been okay in that they don't really rush me. Mine actually spoke to R for a little bit with me outside (R asked for me to leave and he allowed her to speak to him even though he's not her GP, possibly because of the nature of the appointment).

[Aspen]

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.

Where's his eczema? He can use Dove unscented bath bar for sensitive skin instead of soap, or he can use Cetaphil cleanser. If the eczema is on a non-stinky body part like the bends of his elbows and knees, for example, he can just rinse them with water and just use Dove on the stinky parts, rather than lathering his whole body from top to bottom. If he hasn't been tested for allergies, he might want to do that so he can avoid the allergen. If it's just that the weather is dry and he has dry and sensitive skin, he can use Eucerin creme on the dry skin after his shower or bath. Also, he should avoid using very hot water and avoid long soaks.

[goddessoflubbock]

Adhoc - the don't use soap thing was just like when NY gp dx'd my diabetes when DS was a year. She said take one of these a day (glucotrol pill) and don't eat anything sweet or sticky. And out the door she went. I never even got to tell her about the gestational.

Would there be a way to help make the appts longer? Or perhaps have Tge patients fill out a form clarifying their chief complaints for the dr to see first ?

[adhocisadirtyword]

All good suggestions. Thanks everyone.

Aspen - my husband's eczema is severe and has been a lifelong battle for him. We currently use Mustela Sensitive Skin body wash (made for infants) which seems to help. He has a tea tree oil shampoo, a borage oil shampoo (which he alternates and uses sparingly). And all kinds of lotions/creams/medications.

The area is dry and we have cats (that we can't find a new home for - it's complicated), so those are issues for him. We are aware of his food allergies and he chooses which ones to avoid and which ones to still eat. When he has given up all of the foods, he was miserable and his skin was only marginally better. Our best bet is to move to a tropical climate once my daughter moves out with the cats.

Goddess - we do fill out the form, but they never read it, or at least use it for anything. He's had doctors that have whiteboards that we can write on before they come in, and they don't even glance at it.

Maybe it's just a Sacramento thing, maybe it's our insurance, maybe we've been unlucky with our doctors, who knows? But neither one of us have EVER had a good experience. The closest I've ever come to that was getting my sciatica diagnosed and getting the MRI and the surgical procedure I needed. But even that was rushed and had a lot of draw backs.

He's even had a doctor refuse to see him because he was 5 minutes late after spending 1.5 hours on public transportation in getting to the doctor's office in the first place. You have to be kidding me.

We even wait an hour to see the pediatrician and then she rushes in and out so fast, I don't feel comfortable bringing up speech delays or autism. She spends just enough time to lecture us on how small he is and that we should vaccinate him. Two things I'm really NOT concerned about.

Part of me really wants to go back to Kaiser. I thought it would be better away from them, but that's not working out.

[adhocisadirtyword]

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?

Yeah - I've found that to be better, but there's no hospitals near us, besides Kaiser, and I don't think that one is a teaching hospital.

We live in a bad area for close access to decent healthcare. All of the good places are being built in rich areas. That's what I get for being cheap.

[Civet]

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...

I have these problems too, Benji. I think more specific questions from the doctor/therapist could help. Sometimes I go in to see my therapist and I can talk about specific situations in my life that are causing me immediate distress without too much trouble but when it comes to the actual emotional aspects or symptoms, especially longer term ones, I realize in reflection I've left out a lot simply because it wasn't asked about.

As for forms at doctor's offices, one of the most important things I think I've learned (and still have to remind myself) is that most doctors do not look at these. If you have something important to tell them you have to tell them again. I've been given medications I had adverse reactions to multiple times because the doctors failed to look at the form and see that it could potentially be problematic (I have a lot of allergies when it comes to medication). An advocate at doctor's appointments for autistic adults who can't express themselves or ask these questions would be invaluable. I feel that even having someone notify the doctor would not be enough in a lot of cases as they have so many patients and as has been discussed here they are so often rushed, having someone with the patient in the room would be the most beneficial.

I also wanted to second Goddess' suggestion of job and interview coaching. Interviews are really hard and few jobs are given based on ability. Every job I've gotten in my life was either based purely on ability (ie I had the job before any sort of interview, they just saw my work and liked it) or I got it because I had a friend that got me the job. So I've been lucky in that regard, but I know that that's rarely the case, having gone to many, many interviews myself. A lot of autistics have exceptional skills in a given area but they may not be given a chance if they can't get past the interview process.

[Civet]

Another thing would be transportation assistance. Something like specialized driving instructors or advocates who could be in the car during driving instruction would be helpful. It took me a very long time to learn how to drive because I had unclear instructors and because I had a lot of anxiety issues. Someone who is clear and concise and knows not to overwhelm, and understands possible perception and processing issues and things like that would be really helpful in learning how to drive. For autistics who are not able to learn to drive having assistance with navigating public transit systems or even having a "driver" to get them to the places they need to go (like the grocery store if they are living on their own) would be helpful.

[adhocisadirtyword]

I read this on NPR today and it reminded me of this topic.

Ferrier says there are a number of practical reasons why doctors don't talk with patients about weight. With an average of eight minutes per office visit, many just don't have time. And until recently, doctors weren't reimbursed for weight counseling, only for treating conditions like diabetes and high blood pressure that result from being overweight.

All the more reason to show people how to advocate for themselves. The article is about how doctors don't talk to their patients about weight control.

[goddessoflubbock]

I can't remember a dr visit in 30 years where they didn't mention methods for losing weight, like I'd never noticed...