Thursday, March 1, 2018

An Open Letter to Whitney Ellenby

Whitney Ellenby,

What I did to help my 5-year-old autistic son overcome his intense fear of indoor spaces might not have been right or even safe. Doctors didn’t recommend it. The people who witnessed it were appalled, understandably. I don’t suggest this for others.

If you are going to start an article like this?  Chances are you should not be writing the article at all.  If you know what you did to your 5-year-old (5-year-old!) was not right or safe, why wouldn't you caution others to find another way?  A way that was safe and right.  A way that respected the boundaries, the autonomy and the humanness of your 5-year-old child?

You admit you were impatient.  You admit you were not trained in restraint (a violent act even if you are trained.)  This article, from the very start, was never about your child.  It was about you.  Who had no patience.  Who called it a burden when your child became overwhelmed.  I understand not wanting to be judged.  But abusing your child should cause shame.  And I can think of so many things more important than getting your autistic child out in the world.

Like his safety.  His dignity.  

(Also, he was not having a tantrum in those public places.  He was having a panic response at experiencing sensory overload.)

You say that nothing else had worked for your son.  You list the methods you tried (perhaps to make clear that this was a last resort.)  The thing is, you are missing one very important key word:  yet.  Nothing else had worked for your son yet.  People with disabilities often have our own timetables.  It is not fair to measure the progress of your disabled child against nondisabled kids (or, in this case, the progress of your autistic child against neurotypical peers.)  Chances are (and were) that he would have gotten there on his own, with respect for his needs, and accommodations that work for him.

Seeing Elmo in Sesame Street Live is not something most would consider "a desperate time."  Now, if your child was ill and had to go to the doctor to get medicine (not able to cope with the sensory overload but needing to go anyway?)  That's what I would consider a desperate time.  There is no need to force your child to see his favorite Sesame Street character.  There's really not.


[Image is: Life sized Sesame Street characters - including Elmo - as you'd see them in Sesame Street Live.]

You say there was nothing anyone could say to convince you that you were wrong in what you were about to try.  Because you viewed yourself as saving your son from a life entrapped by his autistic phobias.  But just because he was afraid of public places at 5 years old does not mean he will always be.  Giving him time and space is okay.  Your son is not neurotypical.  He experiences the world differently.  Let him.


Your mindset that day was essentially that the end would justify the means.  You said that if neither of you were physically hurt, that his fear will somehow be put behind him, and he'll have a more positive association of this place?  But how is driving your kindergartener to a place you know terrifies him going to reset any of his associations?  At most (at this point) he is learning that his feelings don't matter.  Behavior is communication, and you have stated that you knew you were taking your son to this place absolutely against his willWould you gain anything if someone bigger and stronger than you (who was supposed to love and protect you) instead brought you somewhere they knew you actively feared and forced you to stay there?

You describe your son's strength at trying to get back outside as furious.  You say he is a thoroughbred of resistance.  But your son is not furious, he is panicking.  And he is not a hot-blooded horse, he is a human being, trying desperately to get out of a beyond scary, painful, overwhelming situation.

The lengths you go to, to eventually pin your son to the ground between your thighs and inch him forward toward the doors where the show is taking place is shocking...but not.  Because as a disabled person, violence done to us by parents seems par for the course in this society.  It's for this reason that my heart leapt, knowing that in this case, there were poeple speaking out against what you were doing - for your son.  Telling you the obvious - he doesn't want to go in there.

You use his autism as a valid reason to harm him.  That is so despicable.  Even more so?  You quote the ADA as though it gives you permission to treat your son so egregiously.  (Truth time?  It does not.  The ADA means he has the right to be there if he wants to be, not that you have the right to pin him down between your thighs and drag him into a theatre for 40 minutes as he screams.)

You cite yourself as his reasonable accommodation, but you are not.  Accommodations for your son in this case?  Would look like headphones. Sunglasses.  They would look like a stim toy and/or other comfort object.  They could look like inquiring about taking your son to a dress rehearsal of a show he likes, without an audience present.  Preparing him for what he could expect in advance.  Your son's 'reasonable accommodations' do not include being pinned to the ground by his mom, and dragged across the floor in public for 40 minutes as he screams in terror and fights to get away.

That is not an accommodation.  That is abuse.  That is you traumatizing your child.  That is you forcing compliance.  That is never okay.

Seeing Elmo stuns your son.  He cannot scream.  Cannot speak.  But you continue to slide him along the floor, clutched between your thighs.  Until he sits up.  You walk him to his seat.  He's focused on Elmo.  (Even after something scary, the sight of a familiar character is welcome.)  But just because he is not showing you his hurt, doesn't mean he is okay.

You say what worked for your son was a single traumatic episode.  Anything that involves traumatizing your son should not be considered a success.  He returns to these places because you bring him.  He does not fight because he knows it will not do any good.  He is no match for you, strength wise.  He has learned to mask what he is feeling, but that does not mean he no longer feels it.

You say that you have brought him other places, and that it takes him less time to acclimate now.  Though he is initially confused and frightened but always adjusted.  

He has not adjusted, he is coping.  Covering.  You have no idea how hard he might be working in those moments to pass...for you...for your comfort.

You say that his overall demeanor became as calm and predictable as his perception of life itself.  You say this is the biggest win.

But is it?

Is traumatizing  your son worth it to you?  Is it so important to you that your son is less autistic that you would not only harm him this way in public, but then write an article about it unapologetically?  Write a book about his most intense private struggles?

What will your son think when he reads what you've written?  Will he feel loved?  Valued?  Will he feel respected?

I urge you  to think abut these things.  Your son is a human being.  Don't forget that.

Sincerely,
Tonia

40 comments:

  1. I really appreciate this measured response to a genuinely horrifying personal account. Her son was *five years old.* A neurotypical five-year-old shouldn't have been pushed in this way, let alone a five-year-old who was experiencing overwhelming, uncontrollable sensory distress. Ellenby's language raised red flags for me immediately - describing meltdowns as "tantrums" and referring to "autistic phobias," in particular. I'm sickened that she's publishing a book that presents autism (and parenting) in this way. The concern from other people at her son's distress was obvious even in her own retelling, and her interpretation is that they are ridiculing her! Unbelievably awful, and I'm distressed that ANY of the comments on WaPo are validating this plainly misguided/abusive behavior.

    ReplyDelete
    Replies
    1. Yes, I agree. And I know not everyone is in the place where they can give a response to this. I wanted to speak out, because I do find it abhorrent. Thanks for the comment.

      Delete
  2. I feel very relieved that people are standing up for this child. None of this woman's behaviours are acceptable.

    If he had an intense phobia of hospitals, or something that was life threatening if he could not go in, that would be something. But making him endure that just to enter a space that she felt like you should be able to enter? Not ok.

    ReplyDelete
    Replies
    1. I'm glad, too.

      And yes, if it was something life-threatening that would be one thing. But this? Unnecessary at best.

      Delete
  3. I have not read the original text and my knowledge of autism is extremely limited to my job with autistic 7 year olds and an autistic adult who I hired to do audio editing. From what this adult with autism expressed to me directly is that the meltdowns are a result of when their sensory overload becomes physically painful and their bodies go into involuntary fight or flight mode so this mom did not do her child any favors. If I had restrained the autistic children I worked with I would have been fired immediately. I find it bizarre and disturbing that this was over a non essential event in the kids life.

    ReplyDelete
    Replies
    1. Exactly! You would lose your job if you treated any kid in your care like that! And yes, totally bizarre that this was not even an essential event in this child's life.

      Delete
    2. Yes I was NEVER to touch the kids physically, Yes as one commentor mentioned below if the kid was in a life threatening situation I could sorta understand but using restraint over a show? So so wrong!

      Delete
    3. Yes! Where I used to work, we were cautioned to only to offer comforting touch in very specific places (shoulders or above; knees or below, nowhere in between). And for sure, if ANYBODY restrained any of the kids? (and we did have a few each session with disabilities) the staff would definitely be fired. We were taught to "never say or do anything to a child that we would not say or do in front of their parents." (Tough, though, when, as above, the parent IS the person harming their own child :(

      Delete
  4. I (NT mother of a gorgeous autistic boy) had a similar reaction to yours to this article, right from the start. But it is hard for those of us who embrace neurodiversity and reject ABA etc., but are told that we need to help our kids to go little by little beyond their comfort zones. Any suggestions?

    ReplyDelete
    Replies
    1. Read content by autistic people. Make friends with autistic people. Read and listen to what they have to say. (While I am physically disabled, I am not autistic.) Remember that one day? Your gorgeous autistic boy will be an autistic adult.

      Fox: http://foxtalkswithletters.blogspot.com
      Phillip: http://faithhopeloveautism.blogspot.com
      Rhema: http://rhemashope.wordpress.com
      Ryan: http://iaminmyhead.com

      Delete
    2. Thanks. I’ve been reading ‘actually autistic’ authors for a few years - very enlightening - but I haven’t come across the ones you mention. Thanks for the suggestions.

      Delete
    3. Hi, Tiny
      I'm an autistic adult and pretty active in advocacy. I'm glad that you are one of the parents that gets it and I know it's hard to do alone. I know it's a slim chance, but if you happen to live in Oregon or Idaho, I'd encourage you to reach out to your local autism society and I can suggest other contacts as well. If not, I'd love to talk with you more and maybe help you find like-minded parents as well as autistic adults online.

      Delete
    4. Thank you so much for your thoughtful and generous reply. I actually live in Italy, so not quite round the corner :) Most of my autistic readings are online (things like ASAN, Ask an Autistic, Amy Sequenzia, Judy Endow, TGPA, Autistic Not Weird, all wonderfully helpful). Offline, I am lucky enough to know a few adult autistic people, one of whom has become a close friend. I have approached the comfort zone question with her, but maybe we should have another chat! Thanks again, Carlyle. I really appreciate it!

      Delete
    5. Lovely to read of parents like yourself embracing Neurodiversity and rejecting the 'fixing them' rhetoric, Tiny, and being aware of really good Autistic authors.

      Overcoming fear and stepping outside sensory comfort zones is something that Autistic people can do in time, but nobody can ever be forced to do.
      If Whitney's son retained his love of Elmo through a few more years, one day he may well have found that the attraction of seeing Elmo was a higher priority to him than his fear of the place Elmo was appearing. Alternatively, it may have been a Pokemon movie, a party he really wanted to attend, a public lecture on space travel or football or Minoan history or the contribution of Star Trek to modern diversity theory. As it is, he may be brought to these places and forced to remain, but from my own experience, I imagine the majority of his brain is running coping strategies, rather than getting any benefit out of the occasion.

      To help your own child, the most important thing is to offer opportunities without pressure, and if he seems on the verge of being open to one of these options, prepare. Brainstorm possible issues and solutions. Write a social story about what to expect. Plan what to do if sensory distress is building. Whatever works for your child. He may pull out at the last moment for a few times, but one day he won't. And believe me, he'll be immensely proud of himself - if not right then, maybe the next day, maybe years down the track. But it will have been his work and his victory, not violent forced attendance.

      Delete
    6. Tiny, I think you have picked good readings and I'm glad to know you have found some autistic friends. I recently started writing again after several years. I'd be honored to have a visitor from Italy on my site...
      https://1oddduck.wordpress.com/

      Delete
    7. Thanks, Bungy. I think this is what I’m doing, so I’ll just keep doing it and trying to get better doing it :) My son is happy and loving, so I think we’re on the right track.
      Carlyle, as of this morning you (and Kristen) have a visitor from Italy on your site :)
      Many thanks to both!
      Tiny

      Delete
    8. Tina Mckinney,
      Here is a Filmmaker with Autism who helped me with editing audio description for my films named Dylan https://dylanrothbein.weebly.com
      He is very kind, generous, and has good insights into Autism. He taught me SO much! You can watch some of his films through his website. He is attempting to make a feature length film.

      If you are interested, my own films are here http://cripvideoproductions.com I have Cerebral Palsy like Tonia. :)

      Delete
    9. Thanks, Margot. I’ll check it out. Good luck with your own films too!

      Delete
    10. Tiny McKinney, You're welcome! and thank you so much!

      Delete
  5. Excellent piece, thank you so much for writing it. :)

    Kaelan

    ReplyDelete
    Replies
    1. Thanks so much for reading it. I wanted you to know that you're not alone.

      Delete
  6. I work as a psychotherapist and spent a couple of years in a trauma agency seeing people who'd lived or were living with family violence and sexual abuse. And guess what? Children who have lived in unsafe homes with adults who strip them of their bodily agency and teach them their feelings are unmanageable and unwelcome, who respond to their distress by overpowering them-one of the ways they cope is by becoming compliant, uncomplaining, outward focussed 'happy' looking to others adults.
    It's a survival mechanism to learn not to complain when you know it is hopeless. Forcing a 5 year to go where you think he 'should' be able to go is horrible parenting. Do it over and over to force him into submission is abusive. Disgusting.

    ReplyDelete
    Replies
    1. Thank you for your insight.

      Delete
    2. Your article put it all much more elegantly (and gently). Thank you for laying it all out so clearly.Glad too for the bystanders who intervened.

      Delete
    3. To be clear, I don't believe the mother in this situation requires gentleness, but I knew people (autistic and otherwise disabled people, who have maybe been abused) might come across the letter and I did not want to traumatize them again with its content.

      Delete
  7. It says on the article this woman is a lawyer. It just shows you, people can be intelligent but totally lack compassion. That poor child.

    ReplyDelete
  8. Yes, intelligence has zero bearing on compassion. :(

    ReplyDelete
  9. Thank you for a beautifully worded response to what seems to be a shocking book.
    I am a special education teacher so my experience is limited to working with autistic students, not parenting (although I am a mother).

    I am trained in restraint. In three years in a special education school I used it ONCE.

    And the only time I have ever had to forcibly move or act upon any of my autistic students was when he sat down in the middle of the road. (On a pre planned, risk assessed, fully staffed road safety exercise, with police in attendance and he had been prepared for it in advance. He decided he wanted to sit and that is the ONLY time I have ever justified using any sort of forceful response. That was a genuine risk to his safety! I have also taken him to the cinema. Had he not wanted to go - the only appropriate response would have been to take him back to school!

    If a child doesn't want to do any sort of leisure activity, whether autistic or allistic... It really isn't an issue that needs forcing !

    ReplyDelete
    Replies
    1. Yes, from what I've read re: people who are properly trained in restraint, it is something that is last resort and therefore, rarely used. (Definitely not used like this author of this upcoming book used it.

      I wanted to add that you mentioned your autistic student 'decided to sit' while crossing a road. This is a short video, where an NT little sis interviews her autistic big brother. He briefly comments on the brain / body disconnect that he experiences. It's less than 5 minutes, and worth the time. https://www.youtube.com/watch?v=QsiaGUC-jrQ

      Delete
    2. Thank you so much that was an amazing video ! Really insightful!
      I admit I have never known why my student sat but this explanation in the video would seem to fit. My student was not entirely non verbal but when we asked him why after the event he didn't have a reason - I did always think because there probably wasn't one ! Which links with this video .thank you again

      And yes - I was taught (by more than one person as we have refresher courses and retraining frequently) that if you make the decision to restrain, you would have to be so utterly sure it was the only option left. The reason being that the paperwork we have to fill in after wards is a legal document which has to stand up in a court of law should it ever come to that. After a restraint we have to justify our actions to senior staff and we have to call the parents before the child goes home to inform them and answer any questions and concerns. We also have to make relevent amendments to the students care plan to take into account behaviour which has warranted restraint.
      It is THAT serious an event! It is not something you do, because you want a child to go to the theatre. It is something you do, because the child or someone in the vicinity is at immediate risk of serious harm and every other possible de-escalation technique has been tried.

      Also you would be very hard pushed to find people who are willing to use restraint in the prone (lying on the floor) position (as described in this book) as it is so dangerous. It wasn't allowed in our school at all and I know many many many schools that are the same .

      To put it in perspective I have had a teenager hold a knife (albeit not a sharp one ) to my neck and i did not at any point consider restraining him.

      Delete
    3. Yes, I've read several other accounts (on blogs linked above in the comments) where the bloggers also experience the brain / body disconnect as well.

      And everything you say about your experience with training and restraint sound identical to what I've read on Twitter by people trained in restraint as well. Truly, a last resort option.

      Delete
    4. As a final point it is also a horrible horrible experience for both the child, of course, and the people carrying it out. To be trained in it , you have it done to you as we obviously practice on each other.
      Once you have experienced the total loss of liberty, movement, free will... You would never use that lightly - if you have never been restrained yourself (as in during proper training) you should not be restraining anyone else, in my opinion. Be it your own child or otherwise.

      Delete
    5. Yes, I can imagine it is horrible to experience. Though I have not been restrained, I have experienced other things that make me well-acquainted with feeling powerless. I agree, absolutely, that no one should do what this mother did (especially in a non-life-threatening situation without training.) Thanks for your comments and sharing your experience.

      Delete
  10. Thank you for this article. I will be sharing widely!

    ReplyDelete
    Replies
    1. Thank you for reading and sharing. I appreciate it.

      Delete
  11. I'm a mother of a 6 y.o. with Autism (and 3 other neurotypical kids) and an ER nurse (when I can work). I see both sides to her dilemma of being unable to take her child out into the world. Exposure therapy is indicated for phobias. If there was a therapy that was more gentle available to help her do this, she had the money to make it happen but that nice therapy just wasn't known or available. In my experience as an ER nurse, I've seen adult Autistics, go into full blown meltdowns on metro's, and grocery stores, etc requiring police interventions, emergency room psych room holds for 3 days, etc, only to be let back out into the community to repeat. Eventually the state has to intercede when ER admissions became too many and the adult Autistic taken from their parents because they couldn't handle them at 6 ft 6" having a public meltdown 1 too many times. Could this have helped these people when they were younger? Years and years of behavioral therapy does little for some, but moreso little in the real world outside a classroom. She did what she felt she had to do. Even Autistics feel ABA is cruel, and humiliating. I hate it myself. My kid hates it too. But exposure therapy, in a less life threatening situation at an age where police do not get involved when a meltdown occurs is a great time to practice being in public in my opinion. For her it worked. He is a delightfully happy young man, who adores his mother at these Autism Ambassador outtings. ABA therapy, Exposure therapy....... end justifies the means too. If it didn't work for her, she would have stopped. Whatever opinion anyone has, her book is helpful. We learn from her mistakes, her accomplishments, and make tweaks accordingly as we raise our own kids. Her book was completely helpful for me to find my courage again, and take my son out more..I appreciate stories of the older kids, and learn from their examples, and am grateful we have more resources than they did. Still not enough. Talk to teachers at schools like IVYMOUNT. They're doing restraints on kids having destructive meltdowns, for hours sometimes. Some of them will tell you they wished some of their kids with the most outrageous behaviors had more intensive therapies at younger ages to avoid the pains that go with changing behaviors in larger/taller Autistics. It sucks for them, and their life limiting phobias, their destructiveness, Self-injurious behaviors. Who suffers? The Autistic.

    ReplyDelete
    Replies
    1. As a disabled person myself, your POV truly frightens me. Everything I have read about this author and her book indicates that she has an alarming lack of respect for autistic people. To justify abuse (as she has in her article) helps no one. The autistic community, least of all.

      Delete