I am an educator who works with autistic students and their families.
I’ve been in the field for 20 years. I did ABA but I walked away, feeling like I was being trained to be cold and heartless. For example, to stop a child from running into the street, I was told by my BCBA Supervisor to let this sweet 5 year old autistic child run into the street, then bring him inside, place him facing a corner, tightly hold his arms by his side, place my knee in his back as I sat in a chair, apply pressure so his face fits into the corner and he can’t move, firmly say “no”, make him stay like that for 5 minutes, and repeat until he no longer runs into the street. They had me hold him, straight-jacket style, with his face in the corner. This is what “science” suggested.
It’s been quite a journey. I went on to study relationship-based approaches. This felt so much better because I could look at the human being in front of me. I was trained to value and understand what we were seeing in a different way.
There was a reason, a valuable reason, the child was stimming. It was seen as a doorway into the child’s world where we could connect and expand from.
I was trained to get excited when they spoke and to do anything fun and motivating that I could to inspire more speech! I worked my butt off to get a sound out of a child and when I did, it was like I won the lottery!
And then, one of my families I had known for 14 years changed everything yet again for me.
The boy was 4 when I first met the family. He had done ABA, and we were both in relationship-based modalities together for many years. At the age of 18 he spoke about Wiggles videos all day long. We did our best to use that motivation to elicit more speech. We answered his repetitive questions with a smile on our faces, to show him how much we appreciated his voice. We talked about The Wiggles as much as he needed to as a way to create that doorway to more. We were so proud of him (and ourselves) when he started to show us that he could do basic single-digit multiplication!
And then, at the age of 18, he did RPM. He worked with a trained practitioner and his mom learned how to be his communication partner as well. This is the mom who knew this guy to love The Wiggles and who worked super hard to do basic math with him. This is who he was to us. With every fiber of our being, this is what we believed. It’s what we saw, day in and day out, for years.
He started out needing prompting, of course... just like all modalities do (speech therapy and ABA included). This is the stage where they worked on educational material that has one possible answer so they knew how to guide him to the correct letters. There was no open communication when he’s being prompted to a letter. First he needed to build up his motor skills. As he gained more confidence and built those motor pathways up in his brain, they were able to work toward open communication, without prompting.
What he had to share shattered the beliefs we had held for years. It would have been easy to want to stay in that comfortable place but there was no denying his voice through this letter board. He expressed that he actually hated The Wiggles. He was stuck. He needed help moving away from The Wiggles. He wanted us to ignore his impulsive voice. He wanted to work on his purposeful voice which he had not yet gotten out. Now, a few years later, he is getting his purposeful speech out as he points to a couple of letters, he is able to say the whole word, and sometimes a phrase or sentence!
Before, he was stuck on his iPad. We were stuck with him, in Wiggles-land. Now, he has asked to take away his iPad, and he has asked for chores. He wanted to learn how to clean a toilet, how to make himself breakfast, how to do the dishes, and so much more. We had no clue he had these desires. From someone steeped in relationship-based approaches, I would have NEVER thought about asking him to clean a toilet! NEVER! To him, this was a welcomed feeling of normalcy. He wants to be like everyone else. He has hopes and dreams and desires like we all do. And he’s checking them off a list one by one.... he is now has a girlfriend and he’s taking online college level courses. That’s right... he is no longer limited by his speaking voice’s ability which reflects a much younger level. Through the letter board he is able to show us so much more than we could have ever imagined.
This family is not the only family who I have personally witnessed great changes in through RPM. It is something I highly recommend to families and will continue to do so, because I have personally experienced the depths of change that no other approach could provide these families.
As a professional, I have made the decision to admit when I had it all wrong...many times throughout the years. And I will continue to do so. As a professional and a human being, I am never done learning. The first time I realized I had done this was with ABA. Don’t get me wrong, ABA has worked wonders for some. And it can be done in a more respectful way than the way I was trained in. But that doesn’t mean it’s right for EVERYONE (kids, families, and professionals included). If that were the case, all the other programs wouldn’t exist.
When a trusted organization like ASHA makes a blanket statement, deeming professionals as incapable of seeing when something might not be done in the best way, it breaks my trust in ASHA.
When ASHA tries to discredit RPM and the voices that have come from RPM, without personally speaking with the countless individuals whose lives have dramatically changed for the better, it breaks my trust in ASHA.
Ironically, the result of ASHA’s actions discredits ASHA’s voice.
What makes a great professional is when we can admit when we were wrong. I’ve experienced this to actually build greater trust and respect in our community.
I hope ASHA listens, as the most important people in the community are speaking about this topic - those who are communicating through their letter boards themselves.
Has ASHA & the Ad Hoc committee sat one on one with these families to listen to each experience? I am disappointed to realize that the group of individuals ASHA selected to develop this position statement includes no one with direct experience in the methodologies in question.
The Ad Hoc Committee is a group of individuals that have made publicly documented, derogatory remarks about disabled individuals who use these methods; and have personally attacked those who have supported them.
This position statement was clearly not drafted by unbiased individuals, and multiple viewpoints were not considered in reaching these extreme conclusions.
ASHA must consider pursuing further research into RPM itself before making their official position on the subject.
Furthermore, ASHA is contradicting their own Communication Bill Of Rights Through this statement.
Suggesting that those who use spelled communication are not independently communicating is a violation of the civil rights of these individuals.
I stand with the countless families, asking for the following:
1) That the proposed statements regarding spelled communication be withdrawn.
2) That ASHA issue a formal apology for the damage that has been done by these statements to the civil rights of individuals with disabilities.
I hope that trust in ASHA can be restored by your upcoming actions.
Director, Autistically Inclined