Autism, emergency rooms, sedation and restraints

4 Dec

When I saw this abstract in my daily summary from pubmed I was saddened to see how serious this problem is. In addition, I was glad to see a paper exposing this great need. The problem in short: autistics are heavy users of the emergency room and are too often subjected to sedation and/or restraints during their visit.

I don’t have the full paper so I can’t see if they do the comparison of emergency room (ER) visits between autistics and non autistics. The authors report 13% of autistics (adolescents and adults) had at least one ER visit in a 2 month period. That sounds high. But how high? If we assume a low estimate, 1 visit per individual in the 2 month period, that would give us 78 visits/100 autistics in a year. Compare this to the CDC stats for the general population of 42 ER visits per hundred people per year. To put it simply: autistics are using the ER about twice as often as the general population. And that is clearly an underestimate given that a major predictor of autistics using the ER is previous use of the ER. Which is to say–there appear to be a fraction of autistics who are frequent ER users.

That is serious enough, but here’s the statistic that really calls for action: 23% of autistics in the ER were restrained either chemically (sedation) or physically. 23%. Any restraint or sedation calls out for action, but this statistic screams of a need for action.

The Autism CARES Act calls for an increased emphasis on services. And here is a great example of a paper that demonstrates the need where specific supports or services would help. Autistics have different and greater needs in the ER. We need to determine now what services those services are. And I do use plural on purpose because it is highly likely that the reasons and the needs of autistics in the ER are varied. We need to figure out why autistics are using the ER more often. We also need to figure out why a large fraction are being sedated and/or restrained. We can speculate and possibly there’s more information in the full paper. But this looks like an area begging for more information.

Here is the abstract from pubmed for this paper:

Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family.

The use of emergency services among adolescents and adults with autism spectrum disorder (ASD) transitioning into adult health services has not been well described.

To describe emergency service use including emergency departments (EDs), paramedics, and police involvement among adolescents and adults with ASD and to examine predictors of using emergency services.

Caregivers of 396 adolescents and adults with ASD were recruited through autism advocacy agencies and support programmes in Ontario to complete a survey about their child’s health service use. Surveys were completed online, by mail and over the phone between December 2010 and October 2012. Parents were asked to describe their child’s emergency service use and provide information about potential predictive factors including predisposing, enabling and clinical need variables.

According to parents, 13% of their children with ASD used at least one emergency service in a 2-month period. Sedation or restraints were used 23% of the time. A combination of need and enabling variables predicted emergency service use with previous ED use in the last year (OR 3.4, 95% CI 1.7 to 6.8), a history of hurting others (OR 2.3, 95% 1.2 CI to 4.7) and having no structured daytime activities (OR 3.2, 95% CI 1.4 to 7.0) being the strongest multivariate predictors in the model.

Patients with ASD and their families are likely to engage with paramedics or police or visit the ED. Further education and support to families and emergency clinicians are needed to improve and, when possible, prevent such occurrences.

I will note that there is an inherent bias in the study in that they are surveying parents. In doing so, they will miss those adults who are living away from parents.

We have to be able to do better than sedation and restraints for a quarter of autistics who visit the ER. The first step was exposing the issue and for that I thank the authors. But this is only the first step.

By Matt Carey

11 Responses to “Autism, emergency rooms, sedation and restraints”

  1. Sharon December 4, 2014 at 14:40 #

    Recently, our family experienced a horrifying example of how ER’s and clinicians in general, have not a clue in dealing with autistic children. To the author of this, I would like very much to discuss this issue further with you.

    • Sullivan (Matt Carey) December 5, 2014 at 17:33 #

      By “author” do you mean me (the person who wrote the blog post above) or the author of the study?

  2. Morgan Winebarger December 4, 2014 at 21:03 #

    I believe you misquoted the abstract early in your post. The 13% figure is for the use of emergency services, not for ER visits. I think there may be a vast difference — but, like you, I haven’t read the article either.

    • Sullivan (Matt Carey) December 4, 2014 at 21:22 #

      Good point. I’m trying to obtain the paper now. Thanks.

  3. Lindsay December 5, 2014 at 01:45 #

    Could part of the reason we use the emergency room more be that we are less likely than the general population to have health insurance, because so many of us are un- or underemployed and don’t have access to health insurance through an employer, and also are probably not able to afford private insurance?

    • lilady December 5, 2014 at 04:43 #

      I thought about the use of emergency rooms due to lack of access to private doctors. If you go to the link to the abstract and point your cursor to “Author Affiliations”, you’ll find that each of the four authors is affiliated with health care facilities in Toronto, Canada. I’m assuming that the study subjects are Canadians who would have health care coverage through OHIP:

    • Mitzi Waltz December 8, 2014 at 09:29 #

      I would guess that the increased rate is mostly due to lack of support when people have a behavioural or mental health crisis. There is a documented higher rate of mental ill health in the autistic population, and families rarely have access to home-based services for people with MH difficulties. Unfortunately, the overuse of restraints and sedation is par for the course whenever any person presents in crisis–not, in my opinion, a good response for anyone. When the person has difficulties communicating or communicates in ways staff do not understand, it is even more likely that these will be used.

  4. foxtears April 6, 2015 at 16:52 #

    While I’ve only had to go to A+E twice, I have been physically and chemically restrained on other occasions. I have a severe phobia of pain, needles, and uncomfortable medical procedures. Normally when something needs doing, like dental work, I specifically request sedation. I recently had blood tests where my arms were held down “so that I didn’t accidentally move them”. It was pretty stressful, but I talked to the phlebotomists beforehand and explained that I was very scared and while I had numbing cream and counterstimulation devices applied, it was likely that it would still hurt and be very scary for me. I didn’t feel assaulted in how they restrained me, more that they had understood that my instinctive reaction might be counterproductive. Before holding my arms down, they told me what they were going to do and why, and let me take a break between attempts when one side didn’t produce enough of a sample.

    Overall, not displeased with how they handled me, but I can understand that an autistic person being restrained without requesting or consenting to such treatment is very problematic. Physical and chemical restraint are useful tools that we should absolutely be offered if we feel that they will help us deal with what’s often a frightening situation, but we should always be consulted (unless of course we’re presenting an immediate risk of injury to ourselves or others, under which circumstances I’m sure a neurotypical person would also be restrained). I very strongly hope that this increased use of restraint is not simply for the convenience or due to misunderstanding on the part of medical professionals.

    • foxtears April 6, 2015 at 16:53 #

      Just for clarity, I’m in the UK, where care is free at point of access.


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