Schools Supporting the Idea that Autistic Children Enjoy Being Restrained

(Thank you so much, Ariane Zurcher, for bringing this graphic to everyone’s attention.)

Dear Brookdale Healthcare / Dreamtree School for Children with Autism:

I am writing to you because some troubling and problematic information on your website was called to my attention today.

On your page, located at:

http://www.brookdalecare.co.uk/what-is-autism
/
https://www.facebook.com/thedreamtreeschool/photos/a.746685522010866.1073741843.281260781886678/785176704828414/?type=1&stream_ref=10

You have a graphic describing the autistic triad of impairments and additional difficulties. While much of the wording in the graphic is problematic, I would like to focus on one line in particular because it is potentially deadly.

The graphic says: “appears to enjoy being held/restrained, or cannot bear to be touched.” I believe this piece of misinformation originated with the fact that many Autistic people enjoy deep pressure such as can be obtained from full-body hugs, weighted blankets, or the therapeutic squeezing device created by Dr. Temple Grandin. Many Autistic people find that deep body pressure stimulates our nervous systems in a way that leads to a pervasive sense of calm and well-being. In fact, it is not unusual for an Autistic individual to simultaneously be very averse to being touched and very responsive to certain types of deep pressure.

But I said the graphic was not merely incorrect but potentially deadly and I would like to explain why I made such a seemingly incendiary statement. Many people who work with Autistic children will look at a graphic like this, see the wording “appears to enjoy being held/restrained” and interpret that to mean that it is appropriate to use tie-down restraints on Autistic people or tackle and hold them down physically.

Restraints have killed Autistic people in the past. Thousands of Autistics have been injured and dozens have died from being held down or tied down. Please watch this six-and-a-half minute long film clip from ABC News, discussing the dangers of restraints, including a brief interview with Sheila Foster, a mother whose son was killed by being restrained.

http://abcnews.go.com/Blotter/death-school-parents-protest-dangerous-discipline-autistic-disabled/story?id=17702216

Even otherwise healthy people can suffocate and die just from being held down, due to a phenomenon known as “postural asphyxiation.”

It is negligent and irresponsible to promote a graphic that advises that Autistic people seem to enjoy being restrained. Please remove that graphic from your site and please educate your organization and those you advise as to the dangers of restraints and the importance of seeking other methods of dealing with unwanted behaviors that do not cause the unnecessary suffering and potential lethal risks of restraints.

Thank you,
Sparrow Rose Jones
Doctoral candidate and Autistic adult

to contact Brookdale: http://www.brookdalecare.co.uk/contact-us
to contact The Dream Tree School: http://www.thedreamtreeschool.co.za/contact.html


Edited to add:

Brookdale school replied almost immediately:

Dear Sparrow Rose Jones

Thank you very much for your e-mail detailing your concerns and fears around the wording on the Additional Difficulties section on the Triad of Impairments diagram on our website.

You are completely correct, no one “enjoys restraint” and should be viewed as the very last option, only to be used by trained professionals to prevent an individual from hurting themselves. Indeed any form of restraint shows a failure in preventing the initial confusion / fear (or whatever the motivating point may be) from escalating to the point of crisis someone would need to get to, to require the last resort of restraint.

All Brookdale care staff are recruited having identified a core ethos of person focused care within them, we then train them to have a real understanding of what it is to live ASC (some of this training is delivered by those living with Autism) and in Securicare, none pain holds and breakaway techniques.

I appreciate the wording on this standard Triad diagram could be clearer. The sentence “Appears to enjoy being held/ restrained,” is trying to explain in lay terms, those living with ASC who are hyposensitive, who on occasions feel benefit in it items such as a weighted blanket.

I am sorry if this web page gave you concerns. When training to explain “Autism” in broad terms it can fail to describe accurately the real people we both support.

As you are very aware, if you have met one person living with ASC, you have met one person, as we are all individuals with strengths, weaknesses, fears and hope, if with live with the added pressure of ASC or not.

Thank you again for taking the time to write to us.

Kind regards, Robert Myers


My response to Robert Myers:

Dear Robert Myers,

It is good that we agree on the undesirability of restraint as a first-line practice. It is also good that we agree that the wording on the graphic is unclear. I appreciate that you are sorry if the page gave me concern, but I am unclear as to your choice of action from this point forward.

It is clear to me that the graphic, as is, does not belong on the web site of an institution that care about Autistic people and strives to treat them in the most compassionate and professional manner possible. You appear to be aware that restraint can kill, thus your reassurances about the high quality of the training of your staff. If every effort is made to avoid ending up in a situation where restraint is required, then it is obvious that you share my belief that there is a world of difference between “weighted blankets” and “restraint.”

Why then do I not see any assurance in your letter that the graphic will be removed from your web site or revised? The graphic is concerning and, as it is currently written, it is deeply offensive. It needs to be removed or changed so that people are not led to believe that it is acceptable to restrain members of a vulnerable population against their will because of a mistaken belief that it will be enjoyable to Autistic individuals.

Are you able to offer me your reassurance that something will be done about this troubling and dangerous graphic?

Thank you,

Sparrow Rose Jones


Dear Sparrow Rose Jones

In response to your original e-mail, I have attached above an amended diagram, removing all reference to restraint. This will go “live” on our website in the next 4 hours.

Thank you again for your feedback and I hope our swift response to your request can help to quell any concerns it may have created.

Kind regards, R


Dear Robert Myers,

Thank you so much! I am very pleased by your response and will be sure to tell all my friends and colleagues about the positive change. It is obvious that you care deeply about Autistic people and I wish you all the best in your work to help, mentor, and educate Autistic people and our families.

Regards,

Sparrow Rose Jones

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12 responses to this post.

  1. […] Related Posts: Unstrange Mind – Schools Supporting the Idea that… […]

  2. Thank you for writing this Sparrow. I’ve just added the link to this post on mine. 💕

  3. This is disturbing to me because my son is a sensory seeker. He LOVES to be bear-hugged, he only sleeps well with a weighted blanket, he likes to be squished by me. He does NOT like to be restrained. To completely miss the difference between pressure that is under the control of the person who desires it (my son) and restrait – which is EXTERNAL control of movement, is unbelievably negligent and honestly baffling in it’s cluelessness. ARGGH!

  4. Their reply is even more disturbing than the graphic is. It’s basically like, “Oh, don’t worry, we won’t actually restrain someone unless it’s necessary (and it’s up to us to decide the meaning of necessary), so we’re going to ignore everything you said.”

    • Yes, he defends the graphic, apologizes if it upset me (but not or the graphic itself) and seems content to leave it up. I liked that he said restrain is a failure and means things were allowed to go too far but I hate that he seems to think its still okay because they are trained in how to do it safely. I have many highly incendiary words begging to come out my fingers right now, but I think I will hold back. I am trying to cool down enough to write him back again.

      • Your second email is ALL sorts of brilliant. I don’t think I would have been able to show as much understanding and unclouded logical arguments in any reply to that graphic. Thank you so much for your activism. I know how much energy it takes.

        • Thank you. I had to chill for a few hours before I could write that second email. After the first one (and making the mistake of re-watching the first half of the restraint video I linked) I started sobbing and had to go hold my cat and watch television for a while. I don’t think the liaison realizes how truly, deeply offensive that graphic is.

  5. Lovely – their response to me is the SAME thing. It would be nice, since they say in their own words “if you have met one person living with ASC, you have met one person,” that they would write separate responses…

    • And he came back with it so quickly, it makes me wonder if it was a form letter that they already had laying around because they’ve had to deal with this issue before. And, obviously, did not learn anything from the last time.

      • You’d think that if they get enough regular messages concerned about that piece of the graphic to have a form letter dedicated to it that it would be a lot less effort on their part (not to mention, you know, spreading safer and slightly more accurate information) to just alter the graphic, or – gasp – take it down.

  6. Reblogged this on Opposite Ends of the Spectrum and commented:
    Rough week for autism…another murder + Jrc+ this

    • I’m taking the murder extra hard because I identify with him. I, too, am only truly calm when I’m out in nature. That’s why I’m working to re-shape my life so that I can live in a travel trailer full-time. Robert Robinson will never have that opportunity.

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