Our Autistic Family’s Approach To Therapy

 This was originally written and published in January 2016, on the Respectfully Connected blog.  

Therapy is a controversial topic. I have previously discussed why we go back and forth from little to no therapy for our three autistic children. I do not believe in "Early Intervention" or other pathologizing approaches that view autistic people through the lens of brokenness and ableism. We have continually refused all compliance based therapy. 

The times we have sought out support, it was under strict guidelines ensuring my children's neurology and autonomy would always be respected. When considering therapy for your autistic child, all aspects of it must be weighed heavily. Many professionals are still deeply rooted in ableism and view autistic people in terms of deficits or behaviors that need fixing. 

When seeking out additional resources for parenting your autistic child, I strongly recommend reading as much as you can about the Neurodiversity Paradigm and writing by autistic adults who embrace it.

There are a lot of resources out there that will also support you in your total acceptance of your autistic child. There are online groups for AAC and FC where questions can be asked and answered. If you then find that you and your child are in need of some "in real life" support, you may choose to find a therapist.

When we seek out support for our autistic children in a professional setting, we have stipulations which we lay out to the therapist clearly in advance and must be followed. These are our guidelines:

1. We embrace the Neurodiversity Paradigm. We view being autistic as a valid way of being and reject any therapy which pathologizes autism.

2. The relationship between you and my child will be as equals. It is imperative that permission is given by them prior to activities and before any interaction takes place. 

3. Focus on communication not just expressive language. This includes all forms of AAC and Facilitated Communication.

4. No Applied Behavior Analysis (ABA) methods or compliance based therapy whatsoever. This includes any similar approach rooted in behaviorism. 

5. Requests for eye contact or positive reinforcement for eye contact given is disrespectful and strictly forbidden. 

6. My children's body autonomy must always be respected. A "no" is a "no".  This also precludes forced hand over hand and tickling or affection. 

7. Please do not use stickers, bribery or food rewards of any kind

8. My child needs complete freedom of movement. This means there will be absolutely no insistence that they sit in a chair or use "whole body listening". There should be opportunities for movement including a trampoline, exercise ball and fidgets for them to use.

9. Under no circumstances should there be attempts to extinguish or discourage "autistic behaviors".  This includes stimming, flapping and scripting. 

10. Please do not use my child's interests as currency in therapy unless it is their idea to discuss or incorporate it into play. Their hobbies are their own to cultivate and pursue as they choose and on their own terms.

11. We follow a child led approach and respect our child's individual trajectory.  We will continually meet as a team to discuss the pros and cons of continuing or stopping. 

12. If at any time my child expresses an inclination to skip therapy, we will take a break. (even if that break turns out to be permanent or causes us to lose our spot with your practice) 

Also I have guidelines for myself as a parent with respect to therapy:

* Is this therapy respectful? If there is ANY question, we don't do it.

* If a therapist violates any of the above list of guidelines, we leave immediately.

* Therapy for us is now done on a consultation basis where we go for a certain number of sessions. This enables us to obtain guidance regarding AAC from a speech therapist or sensory integration suggestions from an occupational therapist. There is no pressure whatsoever for my child to interact directly with the therapist if they choose not to. 

* If adding this appointment would interfere with the large amounts of down time our neurodivergent family requires or put stress on my child, we don't do it. 

* I meet with and speak to the therapist at length prior to any interaction with my child.

* I am present during therapy sessions.

* When my child doesn't want to go to therapy, we don't go. If they chose to not do a task, end early or stop therapy, that request would always be granted

* I constantly re-assess. Is my child stressed by this despite outward appearances of having fun? 

I urge any parent not to let societal ableism or fear push you and your child(ren) into a cramped therapy-laden schedule. This will end with you running around and your child being stressed out with the pressure to perform and feeling broken. There is no rush nor is there some perceived "window" during which progress must be made or else. Your child is amazing right here and now without any "intervention".  

Autistic children should know they are accepted fully and that any support you seek is to bolster *your own knowledge*, not fix or change anything about them. Each child is different and comparisons to NT standards are unhelpful. 

My older son did some speech therapy early on and in retrospect I believe what was then chalked up to therapy-related progress can be attributed simply to time and growing older. If I had it to do over, I would have skipped it and let that time just be his, even though he had fun.

When it comes to therapy, it is always best to proceed with caution. Follow your child's lead. The best things you can give your autistic child are total acceptance, unconditional love and support, and a community of other autistic people with whom they can connect. 

ABA deserves blame, not credit

It’s a day that ends in Y so I’m gonna rant about ABA again.

Something I’ve seen really often in the 9.5 years since I realized my older son is autistic is this: ABA gets all of the “credit” and none of the blame.

People often defend ABA like this-

“When my child was 3, they didn’t talk and used to bang their head against the wall a lot. Now thanks to ABA, they are a junior in high school. If it wasn’t for ABA, they never would have learned how to eat different food, use the toilet or to tie their shoes.”

Who among us wasn’t vastly changed from age 3 to 16-18? Why do so many think that autistic people cannot learn without ABA? We are being sold a lie that lines the pockets of people who do not see us as Real People.

That autistic children will only try new foods or change in any way if they receive intensive “early intervention”. Such a gross term which wholly medicalizes a child’s very existence.

Children can and do learn from their parents, siblings, teachers, peers, friends, OT’s etc etc etc. My children have learned to do a lot of things over their 8 and 10 respective years of life and none of them have done a single session of aba therapy.

So much happens between toddlerhood and late teen / early adulthood. The passage of time and maturation is completely disregarded in aba defense and all credit goes to an aba therapist and a “parent who never gave up” or some  similar ableist garbage.

Autistic children and adults can and do learn in many ways. All forms of communication are valid. All of them. Frustration can cause us to want to bang our head when we feel unheard or misunderstood. When we are overwhelmed. Compassionate support, not aba is helpful when someone feels frustrated.

The assumption that children who received aba would not have learned anything without it is preposterous. Children can learn to tie shoes through a good OT, their teachers or parents. Or maybe they never tie a shoe and who cares, because there are Velcro and slip on shoes.

There are plenty of disabled adults with limited diets due to sensory reasons- *coughs* like me, for instance.

No one *needs* ABA. The aba machine tries to convince parents their child will not learn in the absence of a BCBA. Essentially a person who will collect data, manipulate them, withhold beloved things and pretend to be your child’s friend for the bargain price of $40/hr, 20-40 hours a week.

Someone asked me recently - won’t you want to tell your children when they are adults, that you did everything you could for them? That you left no stone unturned and fought for all those services they needed? No. They already know we choose the path of unconditional love and acceptance. The path of pride in who we are and being unashamed of being disabled.

It’s the world that needs fixing, not autistic children. We fight for accommodations they deserve and lament the lack of help for what would actually be helpful (spelling to communicate therapy being paid for by insurance would be a great one). It remains inaccessible to many.

I hope my children will see that we chose for them to have a childhood instead of a years long intervention. One spent outside the confines of a therapy setting, no matter how fun a BCBA might act. They are still trained to see autistic people as piles of undesirable behaviors to be fixed and extinguished.

The measure of success is not a job, using the toilet, eating a lot of foods or tying a pair of shoes. It’s in wholly respecting our children’s autonomy, neurology and in embracing them for exactly who they are. For never talking about ableist things like “mental age” or whether toys or actions are “age appropriate”.

If, 10 years from now, my newly 8 yo child is communicating using a letterboard, keyboard, eye gaze, noises and pitch, an iPad app or any other form of AAC- I would be no less proud than if they used spoken language. We’ve always valued all forms of communication and insisted those in their lives did too.

I will never regret saying no to the ableist systems in place that tell us to grieve for our living children. I won’t regret saying no-

-NO to harmful interventions

- NO to the message that my children are not good enough and need to learn NT social skills to fit in with their allistic peers

- NO to the false notion that they have somehow made my life worse or disappointed me ever in any way. I could not be luckier to be their parent

Who we are at 3 is not who we are at 17. We all change. Is it worth rolling the dice and subjecting my children to trauma so I can say I “tried everything”? Hell no.

A life is not measured in milestones or jobs. Our worth is not determined by our ability to earn or produce.  By whether we marry or have children.  Life is meant to be done interdependently and there is no stigma in that.

I hope and trust that my children will look back and see that we loved them big, right as they were and never tried to fix them. That we were not remotely perfect but fought back against the aba and EI machines that tried to steal their childhoods.

That how they play, move and communicate is in no way wrong or inferior. That we built a bubble of radical acceptance around us and let no one pathologize their existence for friendship or for profit.  

Acceptance and unconditional love towards my autistic children is a choice I know I will never, ever regret.

#SayNoTOABA #ActuallyAutistic #AutisticParent

All Communication is Valid

I recently saw more comments from parents or caregivers bemoaning the fact that their non speaking child “can’t even tell me if they are happy or sad” 

This is a frequent complaint from parents who are stuck on verbal speech as *better* or employing the “Not Like My Child” trope used against autistic advocates who type online.  See also the “different types of autism” myth. 

Everyone communicates.  Absolutely everyone.  My son is non speaking but he communicates all the time without saying a word. 

- He brings me to the fridge or the pantry when he is hungry. I then offer things he usually likes until i get the right one 

- He hands me his water cup and I fill or refill it 

- He will clench his legs tightly if I am not using his super soft clothes (all his clothes are soft , but we have a hierarchy and sometimes the favored ones are in the wash) He makes it so that I can’t dress him until the right ones are used.  Then he relaxes his legs to be dressed.  

- He will pull my bag down when he wants to go someplace (figuring out where is still a work in progress)

- He will climb into his stroller when he wants to sit in it or leave 

- He climbs in the bathtub if he wants to play in the water 

- He uses different pitches to indicate happiness or dissatisfaction. 

- He cries in different volumes and types, depending on what he needs 

- He pushes me away firmly with his feet when he wants space on the couch or the floor 

- He puts my hand on a book or toy he wants 

- He throws a blanket on himself he wants to play this hiding game we do. 

- He asks his sister for things by doing many of the above  

There are many more examples I could give for how O communicates without words or letter sounds.  He is *not* non- verbal.  

It’s not a perfect system and I definitely get it wrong plenty of times. I am not a mind reader. His voice is his own. But he is telling me things all day. Asking for them.  Expressing consent or refusal to do things.   Showing preferences.  

We respect O’s right to autonomy and to communicate his way.   We love him unconditionally and accept him wholly as he is.  No form of communication is better than another. That is ableism.  

People can communicate through:

American Sign language 

Eye gaze 

Blinking 

Noises

Pitch

Movement  

iPad apps

Leading someone by the hand

Spelling

And many, many more methods that may or may not involve any amount of spoken language. 

There are infinite ways for any person to communicate.  The question is- are you paying attention? 

(Pictured is Owen with turkey bacon and pan)

Stop pathologizing Disabled Lives

Do people see how nearly everything disabled people do is shoved through a pathology and “fixing lens”

- Disabled kids can’t just scramble an egg. It’s going on IG. #LifeSkills

- disabled people don’t ride horses. It’s “equine therapy”

- disabled people don’t paint. It’s “art therapy”

- if your autistic child likes music, someone will suggest “music therapy”. (Because you can’t just listen to music when you are autistic *eyeroll*)

- a group of Disabled people can’t go to the mall without it being called a “community outing”

- autistic people can’t change their tastes without the “age appropriate” aspect being mentioned

- your child have a favorite toy? Most therapists will want to use that as currency during their interactions. Prepare to earn it back doing repetitive work while someone keeps score.

News alert - Disabled people can cook, wash a dish, shop and do a zillion other things without some type of therapy or life skill goal associated with it. Things can be taught without gross ableism being a part of it and no, not everything has to be some learning experience. A trip to the mall is usually **just** a trip to the mall. (And a lot of sensory overload but I digress)

We can swim, paint, play music and a million other things without a therapy spin to it. When NT people do these things, it’s just art/ horseback riding / swimming/ making dinner. Stop pathologizing our lives and let us have hobbies and do things without using them in a therapy aspect.

We will get along a lot better when you stop constantly seeing us as people with a list of deficits who need to be fixed, taught, corrected and robbed of real, everyday experiences.

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*before everyone comments, I understand some disabled people love these activities. I’m saying let us decide what we do with our free time and not take the option of it being simply “an activity we like” away from us by making it goal based.