Category Archives: Autism and Mental Health

Realities of Being an Autistic Therapist

Activism/Advocacy, Autism and Mental Health, , ,

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”

  1. 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.
  2. 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.
  3. 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.

IMG_5068

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.

Autism, Death and Mental Health Therapy

Autism and Mental Health, , , ,

The traumatic event of death is something we all struggle with from time to time over the course of our life. It is no different for autistic people. I am often reminded to be sure to identify exactly what the autistic person is struggling with when it comes to their particular circumstances.

I am remembering youngster who had a pet gerbil that died and he didn’t want to part with the beloved gerbil. Three days after the gerbil had passed the pet was still in the little plastic exercise ball, which the youngster was carrying around with him.

I was asked to help this child process his grief so the pet could be buried and the child could move on. I reviewed the grief process and in particular how it pertains to growth and development, but then discovered that wasn’t at all what I needed for this particular child. Since that long ago time I have learned it is important to first understand the autistic person’s perspective. Both the autistic thinking style and the often-unknown hidden curriculum of society will significantly impact how the problem is defined and what will impact a positive outcome.

Autistic Thinking Style

An autistic person is often very literal and concrete in their thinking. In addition, many of us are visual thinkers. As children we often do not have a way to hold an idea or remember something without actually having that concrete item or to continue to talk about that thing so as to keep the picture of it in our mind. For example, if we have been told that we will go to the library after lunch, we might keep asking, “When will we go to the library?” Often, the function of this kind of question is not to learn the answer, but instead, serves as a way to hang onto that picture of the library in our head.

I am learning that with traumatic events it is important to assess and match the autistic style of thinking (literal, concrete and think-in-pictures) of the particular person with the said traumatic event – in this case the death of a beloved pet. When drawing out the scene where the youngster discovered the gerbil ball was no longer rolling across the floor and his mom told him the gerbil had died, I was able to discover his thoughts.

He thought that as long as he could see his gerbil the gerbil was not in fact dead. This youngster did not have a way to hold the picture of his gerbil in his mind without actually seeing the gerbil – hence his need to carry around the now deceased critter. Furthermore, his reasoning informed him that everything he could see was real and that real things could not be dead. (Believe me – this sort of reasoning can make sense to a literal, concrete, think-in-pictures mind, even though it turns out to not be true at all!)

This youngster’s mom brought in pictures the family had taken when he received the gerbil as a birthday present. The youngster also drew a few pictures of his pet. He was able to use the photos and pictures in place of the actual deceased pet. We practiced various scenarios where he put the hamster ball under a pillow and on the other side of the door so he could not see it and instead looked at the photo. It worked. He could remember his pet by looking at the photos and drawings instead of looking at the gerbil.

Hidden Curriculum

Even after this, he was still reluctant to bury the gerbil. I discovered he was missing the practical information about what happens when a living thing dies. Most people automatically pick up this sort of information. It is assumed knowledge. Furthermore, because most people know this information, it is expected that everybody knows it. People with autism neurology do not automatically pick up all hidden curriculum in the world around them. Often, they need some direct teaching.

In this case the direct teaching was an explanation drawn out on paper. This explanation has been used with others over time so I will make it a general explanation so as to enable it to be useful to any reader who might find it helpful. It is written for mature understanding. It can be adjusted for less mature understanding. In addition, various religious or faith-based wording may be substituted.

A body is a concrete entity. The life force is what makes us be individual people (or our pets to be their individual selves). Without the life force of the essence or spirit, it is impossible for the body to live.

Once a body has no life force it will begin to go bad – like food. This happens with all living things. For example, garden or plant food rots once it is disconnected from its life source – the ground, water, sunshine. In addition, animal food rots once it is disconnected from its life source – the live animal.

Pets and human beings are part of the animal kingdom. Their bodies cannot remain stable, but instead physically break down over time once the life force is no longer present. That is why we don’t save the body of a pet or someone who dies. It will only decay. The body is no longer useful.  So, we bury or cremate it. That way we have a place to go to look at something (grave site or cremation urn) to remind us of the loved one who is no longer alive.
 We often remember the good things and great times we had by looking at photos and recalling fond memories.

To recap, I have learned over the years that utilizing autistic style of thinking and searching for and then addressing areas of unknown hidden curriculum are deal breakers. In fact, without this first step, all sorts of well meaning, state-of-the-art counseling techniques and therapy modalities we rely on, while they generally work for most of the population, often do not produce the intended positive outcome for our autistic clients.

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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 April 16, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

Autistic Neurology or Psychiatric Symptomatology?

Autism and Mental Health, , ,

Sometimes autistic neurology – specifically our style of thinking and the way our brain handles information bumps up against what can appear to be psychiatric symptomatology. This has happened to me many times over the years. My style of thinking is visual along with being quite literal and concrete. I understand myself and, in general, thoughts, ideas and concepts by having or creating an object or visual representation of that construct. Here is an example:

“…in my life, I have come to a fuller understanding of the parts of me as represented by actual pastel colored stones. I have the collection in a small box. Each stone holds for me the information about a segment of my history. This is why, as a child, information learned in one setting didn’t automatically transfer to another setting for me, as it seemed to do for others. For example, the “home Judy” might be able to tie shoes and know how to make a sandwich, but the “school Judy” would not be able to access these skills” (Endow, 2009a, pg. 17).

In the field of autism we say individuals are not very good at generalization. We try very hard to help students perform learned skills in a multitude of environments to support generalization. I wonder if we had a way to discover how our student was processing, recording, storing and retrieving information if we might be able to develop a system for them to generalize. Once the system was developed would generalization be able to happen? Nobody knows as it hasn’t yet happened, but it is an interesting question.

In the field of mental health we tend to see Dissociative Identity Disorder when there are distinctly different parts of one person, sometimes the parts unknown to each other. I was actually diagnosed with this back when it was called Multiple Personality Disorder. Today, I believe this historical diagnosis more accurately represents my autistic style of visual thinking in a very literal and concrete way along with the way my neurology processes, records, stores and retrieves information.

“Thus, this first pile of stones was comprised of several pastel-colored bits representing the inside unconnected parts of me –

WHO
 I was in

            different places,

                        much of
the know-how of

                                    the various WHO’s

                                                unrelated to
each other,

                                                            each WHO of Her

                                                                        represented by

                                                                                    a separate
pastel bit of

                                                                                                colored stone”

                                                                                     (Endow, 2009a, pg. 17).

Illustration of Concrete Thinking Impact
Over time, as I grew from a child to a teenager, and then into the various stages of womanhood, I was able to look back over the lifetime of these pastel stones. Each of them had its own bit of Me recorded and encapsulated into an entity of its own. These pastel stones held my history, each era distinct and separate from all the others, with none of the content of the stones overlapping.

Illustration of Information Recording and Storage Impact
No wonder I often felt unconnected to my past, as if I was continually starting my life over! I came to understand that this was a function of the way I recorded and stored the happenings of my life – each bit encapsulated in its own entity, never intertwined with any other events. It often felt to me as if I was lost from myself.

Illustration of Information Retrieval Impact
When the content of these pastel stones became available to me in my thirties, I was finally able to piece together my past into one whole. During my forties I was able to think of myself as one whole person with a past, a present and a future yet to come. Today I have a good sense of my own personhood, being able to line up the story of each stone chronologically to tell my history and also to imagine forward into the future. I do this by thinking about what the story of the next stone will show. I have to be able to visualize a new pastel stone inside me before I can plan something into the future, like an upcoming vacation, for example (Endow, 2010).

I think it is important to start discussing the issue of when characteristics of autism in general and psychiatric symptoms in specific may be a reflection of autistic neurology – part and parcel of how one thinks and how one processes, records, stores and retrieves information.

One reason it becomes crucial in teasing out whether we are looking at autistic neurology or psychiatric symptomatology is because autistic neurology need not be fixed. Instead, we all simply need to understand how it works for specific individuals and then based on individual self-determination we can proceed. For example, in my life, I sometimes explain how I store and retrieve information when I need extra time to answer a question and sometimes I choose not to explain.

On the other hand, when something is reflective of psychiatric symptomatology, then the supports and treatments available to general public need to be available to the autistic too. It is not appropriate to attribute psychiatric symptomatology to the autism. It is appropriate, however, to treat psychiatric symptomatology of an autistic person through the lens of autism. This is another subject perhaps for another blog…or book, and for another time.

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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 March 6, 2016.
To leave a comment at the end of this blog on the Ollibean site click here.