I think it is extremely important for me to learn about autism from someone who has autism. I’ve been reading a book called “Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance and Identity”. One of the contributors to the book was talking about people who call themselves an “expert” in the field of autism. She said, “A hundred degrees on the wall from top universities ma make you an expert in the field of a disorder, but they will never make you an expert on being Autistic” (p. 152). I love that! In the past I had a tendency to get cocky. I thought that my degrees and my experiences as a teacher/clinician/sister to someone with autism, made me all knowing. I look back at that and just cringe. I am ashamed that I thought I could effectively connect with someone without taking the time to really understand how they experience the world.
There is one other chapter in this book that brings up extremely important information about teaching boundaries and Sex Ed. Recently, I have been leading online groups for individuals with disabilities. In one of my groups, I was talking about consent. Consent can get a bit tricky because it is not black and white. What makes people feel comfortable or uncomfortable is going to differ for each person. One person may feel comfortable consenting to a kiss on the lips, while another person may not feel comfortable consenting to that. So, teaching the concept of consent is more than just teaching someone to say “no”; it is also about teaching an individual to know what feels comfortable and uncomfortable to them. Turns out, this concept isn’t easy to teach either. Here’s why.
There is a tendency for many neurotypical individuals to focus on compliance. I recently virtually attended an incredible webinar about this topic. The webinar was given by Kelly Mahler and an autistic self advocate (I can’t find her name, so I wasn’t able to add it). They taught that this focus on compliance also teaches neurodiverse individuals to ignore their needs and the internal signals that their body is giving. For instance, if a neurodiverse child needs a break but we say that it is not time for a break then we are teaching them that our demands are more important than their needs. If a neurodiverse individual says that they need to use the bathroom, but we say that it isn’t time for a bathroom break then we are teaching them that their needs are not as important as our schedule. The more this continues, the harder it is for neurodiverse individuals to understand what cues their body is telling them. These cues not only refer to hunger/thirst or needing to use the toilet. These cues are also related to comfort/discomfort/anxiety/pain.
So, taking it back to consent. Individuals (all individuals, although I have been focusing on neurodiverse individuals) need to attend to their internal experiences and they need us to honor those experiences. When we are honoring their sensory needs, we are teaching them that those feelings matter. Karen Lean (a contributing author in “Sincerely, Your Autistic Child”) said, “I strongly connect disrespecting my sensory boundaries with a vulnerability to unwanted sexual contact… If you deny your child’s desires and pain around her sensory world, she may learn that her body and boundaries are not worth respecting” (p. 49).
I am still learning how to apply all of this knowledge, but here is what I am trying to do. Because I work a lot with adults (who have had years of people telling them that their internal experiences and sensory needs didn’t matter), we go back to step 1 and practice experiencing and labeling sensations. We do experiments together that focus on bodily sensations and pair language with those sensations. I’ve also started to ask more questions. Questions allow me to understand where my client is coming from instead. Prompting what I think the correct response is only teaches the client to say what I want to hear (which is incredibly dangerous in the long run). My goal as an ethical clinician is to understand my client’s needs and help them communicate those needs to others.
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