Going to the doctor

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I was wondering if anyone had ideas on how to have successful doctor appointments when my mom can't go with me. My communication is poor, my speech comes and goes, my ability to report pain or symptoms is minimal... and my ability to control my screaming when frustrated isn't so great either. I really can't go alone, but my mom really can't go with me as she has to work. Any other ideas, parents?

I'm assuming that your doctor knows you and you know your doctor so you are both familiar with each other's ways. Now, it may be like the office my kids now go to and you see a different person from time to time. Get your mom to call and make sure that you are seeing someone you know.

My kids who are NT still want me to go back with them, and they rarely talk to the doctor, just answer questions directed to them and they are teenagers. It's not uncommon for parents to go back there with older kids.

I have AS, and sometimes I take a list with me to help me remember everything I need to say. I'm usually ok but when I get frustrated I get really rude and say mean things, so I try to just stop the topic when it gets that way and go back to my list.

I would say, take a list with you of concerns, or symptoms, or progress on an ongoing problem and just hand it to them to read if you want to. If they ask, just say "It's easier this way and there's no misunderstanding." If you have a way that you communicate easier, like writing or texting or on an ipod, bring it. It won't inconvenience the doctor for you to use that.

Good luck.

Frances

Also, could you reschedule, or get someone else to go with you?

Frances

Rescheduling isn't helpful because Mom works during all doctor's office hours... she works 7-4 and offices usually close at 4:30; not enough time for her to come get me and get to the doctor.

As far as someone else going, the only option is to like find someone at church and pay them to help me medically... but I was told that that's inappropriate, as they aren't family.

Is this your first visit with this doctor, and is it a physical doctor or a psychiatric doctor?

I'm not implying you have psych problems, I just don't know which kind you mean, and I've been to more than a few psych doctors in my time, so there's nothing wrong with that at all.

Frances

Told by whom? You have a disability and need an aide. You can bring anyone you want to bring. The doctor's office can't decide that for you. That's the law under the Americans with Disabilities Act.

They are physical doctors (specifically, PCP, neurologist, endocrinologist, rheumatologist, dermatologist).

I asked a friend who kind of knows a lot of people at church, and she said it's inappropriate to ask that of anyone other than family. Being that I'm the one who lacks social skills, I assumed she knew what she was talking about and that I was wrong.

Write a note explaining your symptoms. Or perhaps bring a laptop so you can type replies to his/her questions.

I don't think it's inappropriate to ask someone who would be about your Mother's age, and who has kids. However, if you have to go before you can work this out, you should bring in a few pieces of paper. On the first, say your name and your diagnosis and state your communication problems, what will make it easier for you and what you might do if stressed and how to handle it. Put on the top of it "PLEASE READ THIS FIRST".

Also put "please return this to me and make sure all staff read" Show it first to the lady at the window where you sign in at.
She may want to make a copy and put it on your chart.

Then have a piece of paper typed out with your basic complaints ie' "stomach ache, thrown up twice today and several times yesterday, no diahrrhea, no fever, took Pepto Bismol and it didn't help. No other symptoms". The nurse who takes my kids back to the exam room only wants an overview to put on the chart outside the door so the doctor can get an idea of what's wrong. For the doctor, you can trype and print out a deeper discription and give it to him. You can also keep a piece of paper with you that says Yes, No, A little, A lot, Sometimes, Rarely, Moderate, I don't know, Please explain more. You can hold that and point at what you want to say, if you can't get your speech going and he's asking you stuff. You can ask your mom what information that various people you will encounter will want and she can help you write all that out.

Doctors have learned about autism, and I would think that if they know you have it, and they know you know you have it, and you come in with specific criteria that can help you and help them communicate with you, they will appreciate it.

It's like if a deaf person came to your door and you don't know sign language, but they give you a card to point to answers or alphabet. Most deaf people can lip read, but in this instance imagine that you have had your jaw wired shut for a reason or been to the dentist and have that numby lip thing and lip reading won't work. Having a way that both of you understand to communicate and both of you know works, would work greatly.

My kids, like I said, are NT. The ones who are still home are 18, 16, and 15. My 18yo cried a little when she had her first pelvic exam because I couldn't stay with her. Even though she knew the lady that did the exam and had known her since she was about 6 years old. To this day, she prefers me to go with her and talk to the "grown up" for her, even though at 18 she is a grown up, and doing great in other aspects of her life. That is just a part of her that wants Mom there.

Being sick or feeling bad makes you vulnerable. It does that to all of us. Before I cut my mother out of my life, I would go back with her to her doctor from time to time. She wanted someone there to "take care of her" and "be her voice". It's not just something for folks on the spectrum. I always make sure I go with my husband, because evn though NT, he won't remember more that his doctor said than the first thing she suggests to make him feel better. Don't ever feel bad about having somebody go with you. It's a normal desire for both NT's and us, and everybody. Except with teenagers want to talk about something personal, and so far mine haven't, but I did that to my mother once when I was young.

Have you seen him before, and does he see people on the spectrum a lot? If so, he should know what to do. What about transportation to and from? Do you do that ok? I would also think, about a help from your church, you might ask your priest. He may know of someone who has a family member on the spectrum or someone whose kids are grown and moved out and needs to feel needed by someone and would love to help you out with a small thing like that.

Either way, know that you will find a way to do this and you can do it, and just because we are on the spectrum doesn't mean that we can't find our own ways to get around the big orange NT cone roadblocks that are out there.

Frances

SuperTrouper, use your strengths.

Writing is one of them.

Make a detailed, bulleted list of what you want the doctor to know about things you want them to check. What kinds of things concern you, what kinds of tests you want done, etc.

Second, make a bulleted, detailed list about what they need to know about you and your abilities/deficits. For instance, explain that you will want to use TTS (and this is a situation where I would rely on it.) Explain that they will need to write down any questions they have for you, and you will need a moment to process the information before you can answer (I'm guessing on this one, but you get the idea.) Explain very specifically issues such as how you tolerate touch, and other sensory issues, and how you want them to handle things like shots, tongue depressors, etc. Let them know that you will probably need more time than a standard visit because you have difficulty communicating. Tell them ahead of time if you can't wait in the waiting room.

Have your aide or Mom call the doctor's office, explain the situation, and find a way to fax or email the second list to the office. Ask if they have experience dealing with someone who has high cognitive functioning but difficulty responding to speech and speaking. Stress the high cognitive functioning; don't let them get away with making assumptions.

Do a little research on what you're going to be asking about, Mayo clinic has a good site that generally explains what to expect at a doctor's visit for a variety of specific medical issues. Prepare ahead of time, and try to have stuff preprogrammed or pre-written as much as possible.

Good luck. I think you can do this.

Did your friend mean to not ask people you do not know well at church or to not ask anyone?

You probably don't want to ask people you don't know well because it will make them feel awkward. That might be what your friend meant.

If you don't have anyone in your church that is more like a family friend than just a fellow church goer, than I echo what a previous poster said about consulting your preacher/priest. Your church may have some kind of group already set up for helping people with medical visits or know who is appropriate to help you.

I may be too much of a noob to be allowed to post links, but I went looking and found this:

http://painconsortium.nih.gov/pain_scales/index.html

You might want to look through there and see if any of the pdf's would help you. A friend of mine advised me to familiarize myself with the faces pain scale so that when I went into labor I would be able to explain my pain without talking, if it got too intense. It might be a good thing for you and when you prepare your written list, you could even copy the visual scale for the "tell me if this hurts" part of exams, or if you are going because you hurt.

Edited to say: I don't like going to the doctor by myself, either, because when I was young, my pediatricians seemed kind of mean. I try to bring my husband along, if I can, even now, when I can pick my own doctors and am careful to try to pick nice ones. When I was single, but well into adulthood, my brother took me to his (nice) doctor a few times because I wouldn't go, even if I was sick and really needed to. So I completely understand how hard it is to go and explain things.

My friend meant not to ask anyone, that it is strictly my mom's job to take me to the doctor.

I like the idea of writing things down... I hope I get my iPad grant, but for now Mom and I can collaborate and put it on my iPod. Also, maybe Mom can call the office ahead of time.

I have a written list of helpful information about communicating/interacting with me... less than a page long... but then my sister said that it will sound extremely selfish and demanding to ask a doctor to change for me

It's very hard to live in a world where you're just learning to form your own ideas and opinions, and people are always telling you no, bad, wrong.

Well, I think your sister is wrong! Keep in mind that your family has a different perspective on you than the outside world, and while it's probably helpful most of the time, sometimes it may get in the way.

I can't imagine that a doctor wouldn't prefer knowing what they need to know going in, and having the opportunity to adapt to their patients' needs. They are there to serve and help you, after all, not the other way around.

The BMV, or Post Office, not so much.

beat me to it. i often write a list of symptoms.

Your sister sounds like the selfish one in this. Don't listen to her. She doesn't seem to know what she's talking about in my opinion.

A doctor is someone you hire to fix something wrong with you. You pay that doctor. Or your insurance does. The doctor is your employee. Would it be selfish if you had a carpenter in your home who is fixing a wall to not smoke in your home if you are a nonsmoker and allergic to smoke? No it wouldn't be. It's your house, he's your employee and he's fixing your wall and his presense is impacting your environment. That's within acceptable parameters. It would not be ok to ask him to dress up like Frosty the Snowman because you find it amusing. Your sister sounds like she's confusing asking the guy to go outside for a cigarette with putting on a Frosty costume. Those are her issues, not yours, so please try not to take anything she says like that seriously.

It's perfectly fine for you to have a list of things that will help you communicate. It's essential for you being able to use their services. It's not for your amusement or comfort, it's for functioning.

It's perfectly ok for you to ask your priest to help you find someone who may want to volunteer to help you out. This is not a choice you have, that you need this help. This is a genuine need. It's not like you are asking for someone to walk behind you and carry a tiara on a pillow just in case you might want to wear it. It's like asking someone to walk with you and let you know if you are going to bump into things because you can't see. It's not like it's a choice. It's a need, not a want. Your sister seems to confuse needs with wants.

Lists help a lot. Even NT's are encouraged to make lists of things for the doctor because at times doctors can feel rushed and depend too much on the patient telling him what they need to tell him. Your list will help the doctor do his job better.

Say you had a job making a computer for a blind guy. I know a blind guy whose computer talks to him. You could just build him the computer as normal without knowing what his specific needs are, and he couldn't use it or it wouldn't be at all what he needed and you either wouldn't get paid or he would buy it anyway and get somebody else to build him the one he wants or he could tell you over the phone that he's blind and needs one that talks and you could build him one he needs that will work for him. As the person who builds computers for a living, would you like the man to not tell you what works for him, or would you like him to just ask for a computer and give no details and all your work is in vain? What I'm saying is, to do your job properly here, to give the customer what they need, you have to know their needs. The doctor, to do his job properly he has to know your needs. He can't do it if you don't give them the parameters of it. That's all you are doing. You aren't asking him to put on a WWF costume and pretend to be Hulk Hogan just for kicks. Which is what your sister seems to come across as not getting.

You do what you need to do. Always. Please.

Frances

Bravo! THIS, definitely.

As someone who more than likely has AS and is parenting a child with AS, we struggle with this all the time. I don't think of myself or my son as being handicapped, because mostly I just don't notice it: he's my kid, we live together. As a result, I often forget that he (and I) have needs that may seem unreasonable in people who have all the capacity we have, but they just plain aren't.

I don't think your sister is being deliberately selfish, she probably has those family-colored glasses that see only capacities and miss the deficits. Sometimes, probably often, that's a good thing - but not today.