In my work as a clinician licensed in my state to provide mental health therapy, many parents of children diagnosed with autism tell me how much they appreciate the fact that I am not only a therapist, but also am autistic. They feel they have a hybrid of sorts – I am a clinician, an autistic and have parented both children with and without autism. In addition, I have been an autism consultant for several school districts over the years so also can appreciate the educational side of things when it comes to their children with autism they are bringing to see me in the therapy setting.
But, it isn’t always like this. There are also the times where parents do not particularly appreciate the fact of my autism. For many, their children’s new diagnosis of autism means that they are just beginning their journey of learning about autism. Most people these days learn new things by employing Google or Siri – it is where we start our journey to find out about those things we do not yet know. And thus it is that new learners are thrust into the good, the bad and the ugly about autism.
Unfortunately, when it comes to autism, Google and Siri will lead people to places that may not be the most helpful. Society’s view of autism is far behind what we currently actually know about autism. There are some particular facets of society’s perception of autism that new parents find on Internet searches that erroneously get taken as facts. I would like to address three misperceptions often presented as facts about adults with autism that can negatively affect parents when finding out their child’s new therapist happens to be autistic.
Three Misconceptions Often Construed as “Facts”
- Parents of children with autism are the experts when it comes to autism.While it is true that parents of autistic children are the experts on their own children and tend to know really lots about autism, particularly how autism affects their own child, autistic people are actually the real experts on themselves – on their autistic selves and how it is to be autistic in this world. I am in both camps – autistic and parent of autistic. There is a distinct difference.
- If autistic adults are able to tell about their autistic experience they are not autistic enough to really know about autism.This is just outright false, yet many parents of autistic children not only believe this, but also act as if it is a fact, thus drawing in newbie parents to unwittingly assume it is so. In reality, it doesn’t even make sense. Getting an autism diagnosis means that the clinician giving the diagnosis determined the individual met all clinical criteria to receive that diagnosis. Thus, if an individual has been diagnosed with autism that individual is autistic. There isn’t any such thing as being or not being autistic enough. It is like being pregnant – you are or you aren’t – you can’t be in the state of not being pregnant enough.
- You will never find an autistic adult who is like your child. Therefore, autistic adults cannot speak to autism in your child.This one is a mixed bag. It is true that you will never find an autistic adult who is exactly like your child. I do a fair amount of public speaking on autism topics. Parents will come up to me afterwards and tell me that I am nothing like their 2 year-old, their 6 year-old, their 13 year-old, etc. The fact is that today I am not anything like I was when I was 2 or 6 or 13 years old either! We all grow and change over time whether we are autistic or not. Autistic adults have had a lifetime to learn how to live more comfortably in the world. They should look different from your child. Even your child will look different in the future than he looks today.Because an autistic adult does not look anything like a 2 or 6 or 13 year-old child does not mean that adult cannot speak to the shared experience of autism. An autistic adult, even if their expression of autism is vastly different from that of your child, shares more neurological similarities than non-autistic people share with your child. An autistic adult often understands many things autistic children are affected by and react to due to their shared neurology.
This list could go on and on, but these three misconceptions about autistic adults that can be readily found during Internet searches sometimes directly affect me as a mental health practitioner. Newbie parents of autistic children who have searched and read up online sometimes think these “facts” apply to me because I am autistic. They then extrapolate that because I am autistic I cannot be a good therapist for their child. The reasoning goes something like this: Because you can talk about autism you are not really autistic enough to understand my child. In fact, you are nothing like my child. And if you really are autistic how can you even be a therapist?
It would be easy for me to react personally to this sort of reasoning, but in a therapy setting where I am the therapist, I react in a different way than I would if I were in a social setting where I would react in line with autistic self-advocacy. As a therapist it is not about me, but about my client, or in my case, about the parents of a potential client. If a child’s parents are not in a place where they are able to believe in their heart that an autistic therapist can be just as capable of meeting their child’s needs as a non-autistic therapist that is about them and their journey. It is not about me. They get to be who they are in the moment and when they are in my therapy room I will respect and support their journey. I will offer them choices and suggest they interview one or two more therapists before deciding which therapist will be the best match for them and their child right now. I leave the door open letting them know that sometimes a therapist they think is not a good match just now for their child might be a good match in the future. Whether or not I see them in the near or distant future I wish them well in their journey. Personally, I hope and expect to see a few of these families in the future because I know as they learn more they will grow and change over time. The erroneous “beliefs” gleaned today from the Internet will change for some as they go forward and continue their journey. And indeed, it has already happened for a few families.
I am sharing this from my own life for several reasons. One reason is that it took me time to learn the difference in roles of self-advocate and therapist. It can be emotionally difficult when parents of new clients think less of me because I am autistic. For me this is compounded because I work with autistic clients and their families. Thankfully, this rarely happens, but when it does it is hard. Even so, and even though I know it is about them and their journey and not about me personally, it is still hard.
So, for autistic therapists out there – solidarity and yes, we can serve our clients well while remaining true to ourselves. As we don our therapist hat we choose to make the session serve the needs of our client. Sometimes this means our self-advocacy hat needs to be worn in our heart instead of on our head for others to see. It is hard to believe, but sometimes self-advocacy isn’t the most important thing in the moment.
BOOKS BY JUDY ENDOW
Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.
Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.
Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.
Originally written for and published by Ollibean on August 8, 2016. Click here to comment.