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Why we stopped most therapies

When my son A was 6 months old, I knew he was autistic. I was absolutely certain of it.  I really enjoyed watching him play and explore the world. He used to spin the rainbow stacking rings on their side and figured out just the right amount of pressure to get them to spin for long periods of time. We knew he was autistic, is autistic, and we weren’t sad about it at all. It was just how he is made and we loved him as much as, if not more than ever.

I later found out that many people grieve at this news. I can honestly say that we did not ever feel grief and do not. I wasn’t sad about it and was confused by the hushed tones in which it was discussed. I was taken aback to be offered condolences over something I felt no sadness about.

When A was about 2, it was recommended by his doctors that we seek out a formal autism diagnosis from the children’s hospital in case he needed therapy or other services. I brought him in and we met with various doctors, a speech therapist and occupational therapist over the course of several days. They played with him and chatted with me at length. We reconvened and they told me they agreed that he is autistic. It was recommended that we put him in 40 hours of weekly ABA therapy as well as preschool.  I had no idea what ABA was but 40 hours a week of anything structured for a child seemed very excessive.

I called the ABA place just to get the doctors off my back and began to research what it was. Someone from an ABA clinic came out to meet with me and my children. When she arrived, A was happily playing with a whisk he carried everywhere with him. He was flipping the light switches on and off quickly and laughing. It was one of his favorite games. The therapist frowned and took out her notebook then began to write.  She said to me “We can get rid of that.”  I was floored and quite honestly offended. I told her I didn’t want to “get rid of” something my child found fun that was hurting absolutely no one.

The more she spoke, the more I realized ABA would not be a good fit for us at all. I told her we were not interested in changing him or making him appear less autistic. She disagreed and said if we did 40 hours of ABA for the next few years, he could “lose his diagnosis”. At the time, the gravity of the ridiculousness of that statement didn’t hit me. It made no sense but now I realize how downright ignorant and ableist of a belief it is.

Autistic people don’t become non-autistic. I knew she meant she would attempt to suppress the things he did that make him different or stand out. This was not something we were interested in or cared about on any level. Quite the opposite actually. We strongly felt and feel his needs are best met by allowing him the freedom to play how he wants with whatever interests him.  He needs to stim and have freedom of movement, not 40 hours of intensive therapy (even if it is under the guise of “play”).

A did some speech and occupational therapy through the county. He also did private OT. Between him and his (not yet identified as autistic) siblings, we were going to 4-6 total therapy appointments a week. This included OT/speech and PT.  It became exhausting quickly and left us few free days to just play and hang out in pajamas like the kids wanted to. Once my son began to walk at around age 27 months, the PT gave us the option of stopping, which we gladly took.

I felt like the appointments for therapy and doctors were making us all stressed out and that we were rushing around too much. Even though the therapy was fun and play based, many days the kids did not want to leave the house and forcing them to go felt wrong. We gradually began to stop doing therapy. Our stress levels went down as our number of appointments went down. I felt strongly that the kids needed to be able to be kids and have tons of time for free play.

We were losing 4-5 hours a week to these appointments and I didn’t think the therapy was necessary. I understand that some kids need speech or PT and am not saying no one should do therapy. I am saying I did not feel it was a good fit. I was opposed to so much therapy, but allowed myself to be pressured into believing that they needed to be in speech or OT.

I can look back now at the three years A spent in weekly speech therapy and the 18 months since we stopped taking him, and say that I feel most of the changes in his expressive/receptive language were a result of time and maturity. If I had it to do over, I would not have sent him.  I think children talk if and when they are ready, if ever.  We do utilize AAC at home with my younger son who is non speaking.  Some autistic children will communicate in other ways that are just as valid and should be respected.

So now, six years after realizing A is autistic and after his two siblings have also been identified as autistic, we are nearly therapy free and much happier for it. We do an OT consult for A and are beginning quarterly speech consults for my younger son.

I think the pressure to do so much with and to our autistic children is dangerous. They are losing out on being kids, playing, having fun. I used to think if the therapy was play based and my kids liked the therapist, that it was kind of like playing anyway. I hear a lot about therapies that “build upon kids interests”  I saw with my own eyes a therapist who continually asked what my son’s latest favorite movie or character was, and then used that to try to get my son to play certain games or do things. Sadly it really ruined his love of that thing and he no longer wants any part of it.

These types of methods are viewed as fun and harmless, but I really believe we need to rethink that. If a child was not autistic, would we use their hobby as a means to try to get them to do certain things? If not, we need to stop thinking it is okay to use an autistic person’s hobby or interest as a subtle attempt to gain favor and manipulate/fix/distinguish “autistic behaviors”.

Children need to be allowed to be children. They should not have to spend all day, every day in therapy. Children were born to move and to play. We used to shuttle to multiple appointments every week. It felt wrong but at the time I didn’t trust myself enough to stand up and say “No, OT/PT/speech every week is too much. My kids are stressed.”  I finally did but in hindsight I wish we had never done it and regret the two years we spent racing around to 4-5 appointments a week for my older two children.

My younger son is 4 has never been in therapy. Since he is autistic, there is a lot of pressure from doctors and the county school system to hurry up and get him in “early intervention” and intensive therapy. I do not even like the term early intervention.  It is inherently pathologizing and ableist.  It implies autistic children’s natural paths are wrong and must be stopped and changed by others “intervening” in them.

We need to stop believing the lies we are peddled; that there is some mythical “window of opportunity” in which children must be taught all the things before it is too late. Children are always learning and changing and growing. We are unschoolers and my children are always learning new and interesting things just going about their day. The fear mongering towards parents is dangerous and is costing children their childhood, a time that is precious and fleeting.

Now we spend our days outside playing, at the library, at the playground, watching TV, playing in the mud, exploring the community on our daily walks and doing whatever we feel like doing. I was wrong to do so much therapy during those early years. I wish I had trusted my own instincts. Children develop on their own path and in their own time. We can’t and should not, force it.  There is so much joy and peace in freedom. This is how we live now.  We have taken back their childhood, and our autonomy.

14 replies
  1. "Mama Rose"
    "Mama Rose" says:

    This is an interesting post, and has really got me thinking. I am the mother of three children, one of whom is on the spectrum. We were desperately looking for therapies and programs and were glad to be part of the early intervention services, because my son could not interact safely around others. This meant he couldn't attend school, have playdates, or even be around his siblings. I needed all those professionals to help us figure out how best to help him. Were we trying to make him different than he was? I guess so. But I don't think that was bad or wrong. Without the years and years of work, my son would not be able to function in society. Yes, I could have kept him home, but only for so long. I often joked about running away and building a cabin in the woods and living like hermits, but truly, that seemed like the only alternative (to therapies and trying to fit in). I am genuinely curious how it works in your family. How can you honor the fullness of autism and yet engage in a non autistic society? And what about most families who cannot afford to stay home to school their children (who aren't accepted in public schools because of their behaviour)? Your ideas seem, well… ideal. But do they really work?

    Reply
    • K. Ann Price
      K. Ann Price says:

      There is an extremely large difference between helping a frustrated and/or self-injuring child find healthier ways of communication and expression, and "therapying" a child who needs time and space to be a kid into an automaton.

      Yes, we autistics get distressed and overloaded and we melt down. It isn't pretty, but neither is the snide bullying we often get from NTs, or the long-term damage from being denied even the simplest of human rights: to say "no" and to play.

      Autism and distress are not the same thing, even if they often show up in the same person. Letting a kid be a kid is not the same as giving up on them.

      Reply
    • chavisory
      chavisory says:

      I have to wonder what you mean when you say he couldn’t interact safely. Because most children, when they’re very young, don’t interact with the world “safely” of their own accord and need adult guidance until they learn not to stick their fingers into electrical outlets, just for instance. Many typically-developing children have to be taught not to hit others, not to throw sand, to be gentle with cats and dogs. Young children don’t enter the world knowing how to interact safely, for the most part.

      We teach them.

      But we don’t seek to change something essential about them when we teach them things like that others have rights, and how to respect boundaries, and how to be safe.

      Oftentimes, autistic children *aren’t* taught the same things that their typically-developing peers are, because the assumption is that they can’t learn, they can only be trained in therapy.

      So I would be very wary of concluding that an autistic child, uniquely, must be made less autistic in order to be taught those same things. Maybe they need to be taught differently, in a mode of communication they understand better. Maybe it will take them longer to get the hang of those things.

      But there’s nothing about me honoring the rights of others to personal safety, to not be hurt, and to their own boundaries, that’s in opposition to me living a full autistic life… Learning how to interact safely with others, and being forced by therapy just to try to “fit in” are different things.

      Reply
  2. Anonymous
    Anonymous says:

    Bless you, bless you, bless you. As an autistic woman I am grateful parents like you exist. I have unschooled my kids for the same reason, except with the certain knowledge those therapies and schedules would have harmed me as an autistic child. You had to guess, and trust your instinct. Brave girl.

    Reply
  3. Steph
    Steph says:

    Thank you so much for writing this. We do no therapies, are made to feel that we are enabling some sort of abuse! Progress may be slower than therapy would be, but I’ve never seen it as a race or as some sort of prize. It’s hard to find others who went a different way as well, the early intervention insistence is so strong, but there are some of us. I hope that when our kids start to self-advocate, they have far fewer stories of trauma and PTSD than many of the current self-advocates I’ve read.

    Reply
  4. phoebe
    phoebe says:

    We are in the same boat. Three of my eight kids have spectrum diagnoses, and we went to one OT session before we knew it was not for us. My kids are profoundly affected by their autism, and are thriving in our unschool life. Hear, hear.

    Reply
  5. Becky Thomas
    Becky Thomas says:

    Yes! Exactly! My 8 year old son is autistic. We started him in speech at about 3. He talked when he was 4, almost immediately in full sentances, and I KNEW it wasn’t due to speech. OT caused numerous meltdowns, mostly due to the fact that they insisted he write when he didn’t want to. He finally asked to quit and I said yes. Best thing I’ve ever done. I’m now faced with the possibility of social skills classes. I don’t believe he really NEEDS them, but I have heard they make lifelong friends with other autistic children, and I’m more intrigued with that possibility.

    Now, my younger son needs therapy. I’m inclined to say no. Why? Well, I’m kinda done. I swallowed the lie that says they NEED OT to strengthen their fine motor skills with the first son. With this one, I’m realizing that he will write when he’s ready. And when he’s ready he will be completely willing and WANT to write. Why force it?

    Yes, we homeschool. Mostly because I found the public school system extremely rigid and flat refused to accommodate my children in the way they needed accommodation. With BOTH my boys, I tried to inform teachers how best to treat my kids, only to be told “That’s not the way we do things around here.” Not once but twice by 2 different teachers.

    I’m all for anything that will help my boys. But, as parents, let’s not swallow the lie that they will “never” gain social skills without help. (Yes, they will.) Or that they will “never” gain fine motor skills without help. (YES! They will.) It might not be at the time that is preferable to the doctors or school system, but they can and will gain those abilities.

    Reply
    • Erin Schroeder
      Erin Schroeder says:

      Just a thought about the writing thing – are you sure writing by hand is the best option for your sons?

      For me writing is physically and mentally exhausting due to a combination of fine motor skill difficulties, joint hypermobility, and having a faster mental processing speed than my hands can keep up with while writing.

      Typing may be a viable alternative if your sons continue to struggle with writing, and/or you could get them finger and wrist supports if you think that low muscle tone or joint hypermobility, both of which are common in Autistics, is contributing to their writing struggles.

      Sorry if advice isn’t wanted, it’s just that I remember how much of a struggle it was to have to write things out for school and therapy and I would have loved to have been given tools to help me write or to allow me an alternative to writing.

      Reply
  6. Julie
    Julie says:

    Wow. What a beautifully written blog. I worked in early intervention for many years and it wasn’t until I left the field until I realized how ineffective we were at times. For some children and families it was incredibly beneficial. For others it was painful on the best of days and grueling on the worst days. As a parent who had a child with diagnosed terminal genetic disorder I was also told therapy would benefit us. I choose not to and spent every minute cherishing and enjoying being with my daughter. She passed away and I never regretted a moment. At the end of the day what works for your family is best. Doctors and therapists need to start to understand there is not 1 prescription that works for all. Parents need to be heard and their choices respected. Bravo mama for making the best decision for your family and standing by it.

    Reply
  7. Jo Anna
    Jo Anna says:

    Wonderfully written and so very accurate article! I bought a book; “When Slow is Fast Enough… educating the delayed preschool child” by Joan F. Goodman after we adopted our son born with Fragile X syndrome.This book was a real eye opener that resulted in my homeschooling my son with only OT once a week “in home” for 30-60 minutes. This article confirms the entirety of this book. I agree completely with Julie. Thank you so much for sharing! God bless you!

    Reply
  8. Maretta Osgood
    Maretta Osgood says:

    I’m feeling the same way. I feel like you and I have walked the same path when it comes to therapists.

    Reply
  9. Through Coloured Shattered Glass
    Through Coloured Shattered Glass says:

    I’m really pleased to read this because I too chose a different path with my son. My first experience of Autism was a T.V. Movie called Son Rise. Fortunately I went to Uni and learned Psychology, which helped me design my own programs. What is described here is also theraputic. If home-based therapies are helping then keep those going. Kids in the Autism Spectrum are just as varied as other kids, so the therapy framework should reflect that. I don’t think it does though…

    Reply

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