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I recently attended a virtual training by Dave Hingsburger. This guy is amazing! He has done some incredible work, especially with regards to respecting the rights of individuals with disabilities. During the session, Dave talked about the need to teach relationship skills to individuals with disabilities. In fact, he emphatically said that we (professionals, clinicians, anyone who work with individuals who have disabilities) should be apologizing to people with disabilities for not giving them the opportunities or teaching them the skills needed to have relationships.

Relationship skills are more than skills that should be used after a relationship has gone bad. I used to think that the most important thing you can teach an individual with a disability is to say “no” or report if abuse has happened. And while this skill is definitely necessary, it should be taught in addition to skills that will enhance relationships (communicating your needs, compromising, knowing what you value in a potential partner, reciprocating, being assertive, how to respond to different opinions/values). The end goal is to help individuals with disabilities form relationships. Having relationships (whether they are romantic, not romantic, in person, online) increases quality of life, for everyone. Additionally, being able to have close relationships with others can also deter some of the negative outcomes that are common for individuals with disabilities. So, what can I, as a clinician do?

1. Provide opportunities for individuals with disabilities to be social. In the groups I lead I have found that so many of my clients want to do things with other people in the group. I have tried to gradually remove myself from the picture to see how far they can get into the planning stages and follow through. They will bring up an idea, everyone gets super excited and then planning stops. They need prompts to see who is free on what days/times (there are a lot of schedules to coordinate), talk about where it will happen (it should be in a general location so everyone can get there), how they will get there (who has access to a ride and who doesn’t?), etc. That is a lot of executive functioning skills…
2. Teach the executive functioning skills needed to follow through with relationships
3. Don’t discount online relationships. Many of my clients prefer online relationships because they don’t have to worry about interpreting body language/facial expressions and because they have time to formulate a response. If it is working for them, then who am I to take that away.

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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Hi! My name is Tricia and I love what I do. I especially love the learning part (I guess I am just a life long learner). There is incredible research out there and I want to share the wealth. So, the purpose of this blog will be to share research-based evidence and layman’s terms and to talk about how to apply the research in real world settings. 

A NOTE ABOUT LANGUAGE

There is quite a bit of debate about how to refer to neurodiverse individuals. People who are advocates of person first language want to put the identity first and the disability second (person with autism; person with an intellectual disability). This is done to put the value of the individual BEFORE the disability. However, some advocates are claiming that that language is harmful because it implies that person is incomplete or flawed. This is especially true for autistic advocates who say, “It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.” (The Significance of Semantics: Person First Language: Why it Matters by Lydia Brown) I believe that both arguments are seeking to place value in all individuals, but they each have different ways of doing it. In the end, I think that decisions about language should be made by the individual. I believe that we should refer to them using language they prefer.

With that being said, I want to spread awareness of the Neurodiversity Movement as much as I can. So, I am going to choose to use language synonymous with that, unless a person or organization I am talking about says others. 

I am also trying to be inclusive regarding the pronouns I use. I want to validate people by using the names/pronouns they are comfortable with, or (if I don’t know what they are comfortable with) using gender neutral language. 

I acknowledge that I will mess up and may use the wrong language. That is part of learning. 

You may also notice some themes popping up. Currently, my passions are teaching sexuality to individuals with disabilities, trauma informed practices and executive functioning skills. So, that is what you will see a lot of. I hope you enjoy learning with me!

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Identity-First Language