Hi! It's Lynn, your adulting coach. Last week I was appalled by the results of a study that was recently published. It showed that autists ages 0 to 24 are twice as likely to die than those without autistic brains.
What is going on here? Apparently the frequent causes of death or choking on Foods infectious diseases heredity hereditary conditions medications side effects heart disease accidents complications linked to intellectual disabilities respiratory problems and cancer. So there's a whole host of reasons
But can we get to the bottom of this? What are the prime causes?
Well they suggested that there are three contributing factors:
1. Social skills leading to isolation, disconnection, not as robust a support system
2. Employment meaning they're isolated even further they don't have contact or the funds the money to support some of the things that they need and so one thing can go wrong in their life and the whole house of cards can fall down because they have no savings
3. Self-sufficiency differences. The more self-sufficient, the report suggests, the more likely they are to live longer
So let's look at each one of these.
Social skills abnormalities and social smiling was one-sided, a lack of attention, low interest in other people and poor receptivity to others cues.
We've seen that low levels of adaptive functioning meaning that it's hard when things change or just dealing with the challenges of life aren't skill that they get and keep.
The high rates of unemployment lead to isolation and the lack of funds, and all of the downsides to being isolated in whenever something bad happens fewer people are there to support them.
One thing that came out was that autists have health complications about 20 years earlier than those with non-autistic brains.
Alex Howard's Decode Your Nervous System program explains what could be happening. I've linked to it in the notes.
He suggests that the research supports the conclusion that maladaptive stress responses affect us at the cellular level. Those nervous system responses meltdowns and shutdowns if they're not addressed and if we they can't recover the way they need to from them can have an impact on us at the cellular level at the mitochondria level.
He explained that those mitochondria are there to help us repair any damage that occurred in our body. Unfortunately when we're maladaptive you know a good portion of those cells are taking care of the stress responses so they don't have enough time to deal with the healing that needs to happen. So what can happen is that healing part doesn't occur so they can end up in autoimmune function disorders and other things gastrointestinal, cardio, other types of repairs that should be going on just don't have the resources to help them.
We just need to recognize first that all autistic people are individuals we want to do our best to understand their challenges, connect with with what matters most to them and practice helping them get what they want to have a self-determined life.
This is what we practice inside The Art of Adulting.
The studies that I read offered 10 suggestions to Health Care Professionals and I've added one.
1 Here's the first one is always consider that a patient may be autistic. So many people, especially women have masked their symptoms and for so long that they just pretend that they're getting things. I see this happen with my graduates in general and both male and female.
NOTE: With their permission, it might be helpful to send documentation that confirms an autism diagnosis to their primary physician. That way asking for accommodations includes the back up evaluation to support the request.
2 Because they don't want to appear stupid. They've had enough teasing about that in their life so they do whatever they can to appear normal and pass. I address the slower processing speeds that I see in our graduates sometimes. (Frankly this is a great option for me as well.) I encourage my health care providers to allow me to transcribe our meetings. I realize that in 10 to 20 minutes they're trying to convey a lot of information in a short amount of time so they don't get behind in their schedules.
A transcription lets me to go back over the information that was presented at a time when I'm not as highly stimulated by the environment that I find myself in. I can listen better and decode better the message that was being sent to me. Transcribing the appointment helps with the other people that love us so that they can read what the doctors said as well. So I think it's a great practice for all of us.
3 The next thing is we want to make sure that we adapt the sensory environment as much as possible so that it doesn't overstimulate and cause a shutdown or a meltdown. That includes allowing them to wear earbuds whenever possible, having cozy clothing to wear, maybe even a fidget in the pocket or anything that helps them to lower the response of their nervous system.
4 We want to consider that sometimes our autistic graduates are not as fluent at describing the symptoms that they're having. It could be that there's some interoception, some internal awareness of what's going on in their body that's different.
It also could mean that they don't have the words to describe the emotions that they're feeling (alexithymia) and that's really important for us to notice. We can help with finding the words like uncomfortable and comfortable or you know high energy low energy. Anything we can do to help them translate what's going on in their bodies, the vibration in their bodies, so they can translate those for the for the health care providers
5 we want to do our best to create predictability and support their ability to pay attention and ask questions in the meeting. So whatever we can do to make sure that they know well in advance of the meeting of the doctor's appointment. It's the same place they go to every time so it's very predictable. They that they know some of the routines once they get there. We're in a situation in a room where they have the closest face to face with the provider so that we sit back and let them be um be the the person with all the providers' attention.
6 We want to also notice sometimes that our kids will clam up when it comes to describing what's going on they're embarrassed or or they um just can't find the words to describe it or you know it's just the questions that the doctor's asking don't make sense to them so they're worried about asking them to explain it better. there's a whole lot of reasons why our autistic graduates aren't forthcoming with some of the problems that they're facing.
I like to pre-plan our meetings with Healthcare Providers. I like to write down the topics that we're going to talk about and rehearse them with them so that I have a good idea, not so that I say anything, but so that they are familiar with it. Sometimes I copy the list and text it to them in advance as well so that they know what we're going to be talking about at this doctor's appointment.
7 We want to support any other ways that they like to communicate with the doctor. I love the fact that our doctor now is very open to email so that our graduates can email them at any time.
I've also shared articles and and points of information like these studies that are linked at the bottom of this video so that they have more information about meeting the autistic grad our autistic graduates where they are.
I do think that it's worth it to do our best to just take that level of understanding up one degree with our health care providers because anything that we can do matters. It's worth the work for us to take the time to do that. we want our health care providers to meet them where they are but it's hard for them to do that if they don't understand where they are.
Sometimes I will send an email in advance to their provider letting them know what's going on from my perspective. I make sure that I note that it is from my perspective so that they have a heads up about some of the issues that may be affecting our graduates health.
8 I want to make sure that they listen well to our graduates because sometimes they rely on their behavior like whatever the exam reveals, or how they react to a question that's being asked. I'm not sure that those are reliable diagnostic approaches with our autistic graduates.
9 We want to make sure that our providers understand that there's just a lot of trauma associated with having a different neurology in this world that is not at all designed for that neurology. So those traumas that have happened to them may mean there's a little less trust in the relationship that the provider would want or they're not so willing to accept the recommendations of the provider without more explanations. They may need time to process the idea and figure out, "How am I going to fit this into my routine? How am I going to change the behavior that they're asking for me to change?"
10 I love the fact now that we can electronically book and change appointments because trying to do this over the phone has never really worked well. We make sure that we always make our next appointment at the end of our completed appointment so that there's already one on the book and if it does have to be changed I'm really thankful that we can just go right on our phones and and change them to a better date for them.
Those are the 10 actions that we can take that are also recommendations to Health Care Providers to help them really understand and connect with our autistic graduates so that we can help them practice the best health care strategies possible to to beat the odds of the statistics that are available today.
Please join us inside the art of adulting. All kinds of other goodies are inside our program. There's more free resources including my Adulting Roadmap at the LinkTree Link below thanks for listening. Bye for now!
