Life on the Spectrum

Being Called a Burden

In addition to Asperger’s, I have lived with type 1 diabetes for most of my life. It was not something I chose, nor something I caused. It was caused by an autoimmune reaction to a childhood virus, not by obesity or inactivity or too much sugar or playing video games or any of the other supposed causes of diabetes.

People with diabetes and also people with autism spectrum disorders are often referred to as a “burden” — a burden on the health care system, a burden on the economy, a burden on the school system, a burden on taxpayers, etc. I don’t like being referred to as a burden, and I am sure other people don’t either.

When it comes to diabetes, proper health care and effective diabetes treatments and control can lessen the expense of diabetes to the health care system and to the persons with diabetes. With proper care by both doctors and the diabetic people themselves, people with diabetes suffer fewer complications and spend less time in hospital. Not only that, but people with well-controlled diabetes actually have fewer sick days and miss less work than people who don’t have diabetes.

When it comes to autism, I recently saw an article entitled “The epidemiology and global burden of autism spectrum disorders.” (You can read the abstract here.) There’s that “b” word again. The study that this article is about treats autism as a disease (hence the word “epidemiology”) and talks about how to estimate “the global burden of ASDs.”

Interestingly, the conclusion was that autism spectrum disorders “account for substantial health loss across the lifespan.” Since autism is not a physical illness as we understand illness, I would suggest that this means autistic people are not getting the health care we need. I have personally found that doctors do not take me seriously when I try to tell them about how I am feeling with regard to pain I experience (both physical and mental) and they accuse me of exaggerating and looking for sympathy. This then makes me reluctant to tell them about any health problems I have, and therefore these problems don’t get treated. I have also heard that many people with intellectual disabilities don’t get the care they need due to difficulty communicating with doctors. This could especially be a problem for non-verbal people, especially since doctors make more money by seeing more people, and they may not want to spend the extra time necessary to communicate effectively with a non-verbal person, who may be typing out their answers or requests on a computerized device, or an intellectually disabled person.

While I didn’t see it mentioned in the abstract, another “burden” of autism is the cost of government financial benefits paid to autistic people who are unemployed. Many autistic people can work and want to work. Autistic people can be some of the most dedicated and hard-working employees an employer could have. Yet there is an extremely high unemployment rate among autistic people because employers don’t want to hire us or don’t want to make any accommodations (like giving written instructions instead of verbal, or vice versa; providing a quiet environment; allowing an autistic employee to wear sunglasses, earplugs or headphones; allowing the employee to do the job a little differently or take a little longer as long as the job gets done and doesn’t hold up overall production.)

Another reason for employment problems is that autistic people often just don’t interview well due to our differences in and difficulties with communication. Job interview questions are often about hypothetical situations — “what would you do if/when” — and many autistic people just aren’t good with hypothetical situations. We tend to be more concrete than our non-autistic peers. (Not all of us, by any means, but many of us.) Another common question is “Tell me about a time when….” The problem here is that an autistic person could try to find a situation that literally matches the question and may not be able to find one, or maybe they just haven’t been in such a situation, literally or not. In fact, not having a situation to describe to the interview probably isn’t exclusively an autism problem.

Another conclusion of the study was that “epidemiological” data about autism (I wish they’d just said “prevalence” of autism) is necessary so that governments can plan for educational, housing and financial support services. I support this conclusion and think it is good that governments have an accurate picture of how many autistic people will need these services. However, I have two quibbles. One is that just because people need the services does not mean they will get the services (services to people with disabilities in general are being cut left, right and centre in most countries), and the other is that we don’t need to use language like “burden” to provide this information.

My own conclusion is that first of all, people need to stop using the word “burden” to describe those of us who have physical, mental or neurological conditions. Next, in order to help us achieve our potential and not have to rely on government benefits, we need proper health care so that those who are capable of working are physically healthy enough to work. Then we need to work on ways of getting jobs without having to endure the typical job interview. Finally, when we actually have jobs, we need proper accommodations from employers so that we can keep those jobs.

That is how to stop us being “burdens.”

Advertisements

Comments on: "Being Called a Burden" (5)

  1. It is all in the eye of the beholder! People want to see those with autism as “different,” as a “burden” on the rest of them. If they just make an effort to include us and listen to us, we will not be a burden, and in fact can contribute a lot to society!

  2. followtheleadercomic said:

    As accurate and amazing as this post is, I can’t help but focus on your opening paragraph here. I also have autism and Type 1 diabetes (as well as many other conditions caused by the initial autoimmune disease and other factors), which isn’t a common combination in my experience, so knowing there’s someone out there who can relate to me just that little bit more is a great boost to my mood.

    I’d just like to add this question that’s been plaguing my doctors and family for a few years now: Have you ever found that your autism has gotten in the way of treating or controlling your diabetes? It seemingly has for me and I was just wondering if it was the case for anyone else too.

    • I don’t think autism and type 1 are that uncommon a combination since autistics seem to be at risk for multiple autoimmune diseases. Having said that, I do know only one other person (besides you now) who has both. Regarding autism getting in the way of controlling diabetes, I wonder if it’s the autism that makes me under-sensitive to changes in my blood sugars so my blood sugar can shoot up extremely high and I don’t realize it until I notice that I’ve gone to the bathroom multiple times in a short period of time, or it can drop down low and I don’t realize it until I do a test. I’ve also found that anxiety and hypoglycemia feel exactly the same, and I’m anxious 90 percent of the time, so I either ignore the symptoms of hypoglycemia because I think they’re anxiety or I waste multiple test strips because I think I’m low.

  3. […] real life, we are presented as burdens as well—and are often aware of it even when we may not seem to be listening. This has […]

  4. […] for characters written to “low-functioning” stereotypes…. In real life, we are presented as burdens as well… This has consequences. At the extreme end, media or other parents justify parents […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: