Saturday, April 23, 2022

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. 

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 p...