How can we make our autism clinic more sensory friendly?

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skibum
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04 Jul 2018, 9:19 am

BeaArthur brings up a great point about not being treated in infantile ways. But on the flip side, if an Autistic adult needs to play with the toys in the office and needs to be allowed to be very emotionally young, please respect that need as well. It can be a very difficult and delicate balance for those of us, like myself, who are very mature intellectually but who are extremely young and like little children emotionally. We need the balance of both and it is important that when we are young, people treat us at the age level that our brains are actually in, not at our chronological age levels. But on the same token, it is important to recognize that that same person who is emotionally very young is also an adult and in many ways will need to be treated and expect to be treated as an adult of his or her chronological age. So you will have to really pay close attention and ask questions if you need to understand the age level at which someone functioning at any given moment and understand that those functioning and age levels can change moment to moment without warning or notice. So you have to be prepared to just go with the flow and not criticize or challenge someone if her functioning levels change dramatically in very short periods of time. You will get to know your regular patients in time but if you really allow them to be who they are and work with them, they will trust you. Trust is super important and the more trustworthy and respectful you are, the better our interactions with you will be.


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04 Jul 2018, 9:23 am

I already can't contribute alot.
You chose a good place for this important question.
In general make limits on the volume of headphones and tvs, use mosquitoe nets on your windows if those get opened. Its underestimated how annoying it can be if i have to hear to what comes out of others headphones, staff should be wary of that. Please avoid clocks, i can sometimes hear them behind closed doors. If you use led lights get something like an array of them hidden behind a blurred transparent material, and not those that result in pointy lighting.


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skibum
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04 Jul 2018, 9:29 am

Have big bathrooms with plenty of room to move around in and hooks to hang purses and bags and toilets with toilet lids that you close before you flush. Also use faucets that have the water come out automatically as well as automatic soap dispensers and paper towel dispensers to make it easier for people who might have trouble with motor skills.


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Aspie1
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04 Jul 2018, 12:32 pm

Here's something nobody mentioned so far: fear.

Many autistic children get scared in doctors' offices, and not without reason. At the same time, many parents get angry and/or punish their child for showing fear at a medical appointment. This is more common in parents of boys than girls, even though autism is more common in boys. Heck, I used to get in trouble for that constantly. And oftentimes, the stupid doctors thought they were helping me by "naming my emotions". :evil: So even though I held back my tears like a trooper, to avoid getting in trouble, I still got yelled at at home later.

So if you notice a child looking scared, like terrified eyes, body fidgeting, hands shaking, but not outwardly crying, DO NOT SAY ANYTHING. If you do, you will draw the parent's attention to the child's fear, and get him in trouble with the parent. In other words, you will throw the child under the bus, effectively making yourself "the enemy" in his mind. Sure, do what you can to comfort the child, like talk in a soothing voice, explain the procedure in plain English, answer questions honestly, but DO NOT MENTION THE CHILD BEING SCARED. Just pretend you didn't notice, do the procedure as planned, and thank the child for being cooperative. As an added bonus, you will give him an unintended self-esteem boost, that he allegedly hid a "prohibited" emotion from adults. (Don't mention that you read his emotions like a book, either.) If he asks "Did I look scared?", deny, deny, deny everything. :)

If possible, ask if you can do the procedure one-on-one with the child. Failing that, have the parent sit behind the child, facing you, so they can't see his (scared) facial expressions. It's not impossible that the child's fear may be caused more by getting in trouble for showing fear, than by the procedure itself.

And oh yeah, ABSOLUTELY NEVER use the word "relax". It has the opposite effect even on NT kids, never mind autistic kids.



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04 Jul 2018, 3:56 pm

Skibum's initial suggestions describe a fun place where I'd love to go!

Getting to choose between three types of chairs, and one is a beanbag?

Esmerelda Weatherwax wrote:
And I can't recommend this enough: a TV-free zone. An area where the TV isn't in anyone's sight line, where the sound doesn't disturb them.

Yeah! Why do restaurants keep having the TV on?
Okay, maybe people watch sports in the sports-themed restaurant.
But nobody watches TV at the Mexican restaurant! The TVs are just a waste of money.
At least the ice cream parlor has nice old-style decor that doesn't keep moving.


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skibum
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04 Jul 2018, 5:30 pm

What kind of services will this clinic be providing?


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05 Jul 2018, 5:11 am

Maybe have some written guidelines and/or reassurances posted on the wall?
Not sure about other people but clinics tend to freak me out a bit, which means that I need more reassurance than normal about what's going to happen. But I don't like to ask. So just simple things like how long I might need to wait for and whether they will call me or come and fetch me. What to expect in the appointment and how long it might last? And things like whether there's a bathroom I can use. Just some reassurance on what's going to happen.

Edit: I guess that's going off topic a bit - not related to sensory friendliness. (But maybe anxiety friendliness?)



skibum
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05 Jul 2018, 6:11 pm

MrsPeel wrote:
Maybe have some written guidelines and/or reassurances posted on the wall?
Not sure about other people but clinics tend to freak me out a bit, which means that I need more reassurance than normal about what's going to happen. But I don't like to ask. So just simple things like how long I might need to wait for and whether they will call me or come and fetch me. What to expect in the appointment and how long it might last? And things like whether there's a bathroom I can use. Just some reassurance on what's going to happen.

Edit: I guess that's going off topic a bit - not related to sensory friendliness. (But maybe anxiety friendliness?)

I think that is a great suggestion and very relevant to sensory sensitivities.


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05 Jul 2018, 10:44 pm

I agree with most of the stuff that I've seen up here so far.

I have a few things to mention, myself as well.

Patterns: Many of us notice them, I personally find simple ones enjoyable attention grabbers but more complex ones or randomized ones can give me a headache. This is something to think about if you are going to have rugs or curtains or what you are considering in places where you have tiles, like the bathroom.

Another in line with olfactory sensitivity: be careful with what you use for cleaners. There are some bathrooms that I can't go into because the cleaners they use make me want to vomit.

Also, Audio: Avoid bells to get peoples attention (I am among those who actually feel physical pain when they here such sounds. Communication to the people waiting is probably best done in person rather than over a speaker.

Most Importantly, Listen to your Patients: As you can see, each of us is different with their own unique sensitivities.

Also, let us know you care and try to give us a degree of control over our environment: You'll notice that the both are common themes in the suggestions listed here. This is because both are extremely important and often rare commodities for people with disabilities. If you can work these concepts into your plans in as often as possible, it will play a major part in our comfort. Many will notice and be grateful.

In this vein of Respect and control, I would also recommend that you set up an optional survey: You are asking us on the site. Ask the patients who are depending on you directly and listen to what they have to say.

You could ask your patients what their personal sensitivities and preferences are before they get in (also considering asking them directly when they are in a space if there is anything you can do). There are often simple things you can do to optimize their comfort when talking to them privately. Something as simple as the lights you use, whether you crack open the window or positioning their chair in a certain spot/angle might make a world of difference in their comfort level. Would a soundbite of singing crickets or rain on a roof help make them more comfortable? Is there a certain behavior most people have that drives them nuts? Try to find out. Maybe even leave an open box for suggestions that you didn't think to ask about. I've seen some pretty unique stuff while I worked at a summer camp for people with disabilities, myself.

You could also set up a post visit survey where they might rate their level of comfort while they were there and a space to explain the reason if they felt uncomfortable.

I hope that you find some of my suggestions here, as well as in the other posts here, useful. Thanks for going so far and asking us for advice in making your clinic a comfortable place.



skibum
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06 Jul 2018, 11:47 am

Make sure that you have seating that is easy to move if people need to move them like the above poster mentioned.

Also I really want to know what kind of services you plan to provide to Autistic people. This is extremely important and I want to make some suggestions but before I make my suggestions, I want to know what your clinic has in mind.


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08 Jul 2018, 3:40 pm

Audrey, the reason I keep asking what services will be provided is because there is a type of service that is critical to the survival of many high functioning Autistics that is not being provided by anyone anywhere at all. This is the service of temporary respite. Respite is provided to low functioning people to give their families and caretakers a break. But when we are higher functioning and we don't have families and caretakers helping us, we often find ourselves so overwhelmed with daily life that just staying alive becomes a struggle. I have been needing respite for myself for months now and it is impossible for me to get it. Hospitals and homes will not provide it. I need a place where I can go whenever I need to for a few days and be fed and nurtured and cared for in a sensory safe environment with people who will understand and respect my needs and my situation so that I can recover. I know that I am not the only one who needs this. Please provide this service. It might be very helpful in preventing many suicides by high functioning Autistic people.


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09 Jul 2018, 12:41 am

skibum wrote:
Audrey, the reason I keep asking what services will be provided is because there is a type of service that is critical to the survival of many high functioning Autistics that is not being provided by anyone anywhere at all. This is the service of temporary respite. Respite is provided to low functioning people to give their families and caretakers a break. But when we are higher functioning and we don't have families and caretakers helping us, we often find ourselves so overwhelmed with daily life that just staying alive becomes a struggle. I have been needing respite for myself for months now and it is impossible for me to get it. Hospitals and homes will not provide it. I need a place where I can go whenever I need to for a few days and be fed and nurtured and cared for in a sensory safe environment with people who will understand and respect my needs and my situation so that I can recover. I know that I am not the only one who needs this. Please provide this service. It might be very helpful in preventing many suicides by high functioning Autistic people.
Wow, what an interesting concept! Props for coming up with it. :thumleft:

My "respite" was provided by the Carnival Cruise Line. I had four days of nonstop fun, endless food, lots of alcohol, cheap cigarettes, and a friendly crowd. I had so much fun on that cruise, I still cherish the memories. With that said, cruises aren't for everyone. I already processed the sensory issues I once struggled with, so I handled everything that came my way. At the same time, the ship was crowded, noisy, and rocked and swayed a lot. Many aspies would find that intolerable.

I'm not sure what to suggest for your clinic, other than finding legal ways to provide alcohol to patients. It can help an aspie relax, make a bad experience more tolerable, and make a good experience even better. I first started (ab)using alcohol when I was 12, and let me say: it was more helpful than all therapies put together! When I was so depressed that I cried nonstop for 8 hours (all no thanks to a therapist's actions), a gulp of whiskey gave me pure joy. It lifted me out of depression like a rescue helicopter.



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09 Jul 2018, 2:11 am

There are aspie friendly cruise lines now. I would love to go on one especially Norwegian or Disney. But there is no way that I can afford the cost. And I would only support a cruise line that was environmentally conscious. I don't know if Norwegian and Disney are but I hope they are. But I have no way to financially afford anything like that. I am really glad that you had a good time and that you were able to enjoy the cruise you took. That is awesome.


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