Category Archives: Autism and Mental Health

Mental Health Therapy and the Autistic Client: The Autistic Operating System

Mental health diagnosis and treatment has evolved over time according to what makes sense and what works for most people. We have an increasing body of research around mental health issues that informs us today. However, when it comes to autistic people we do not have a body of research that informs us about diagnosis and treatment of mental health disorders. Autistic people are not like most people. This means we need to understand the underlying autism neurology along with its impacts in the realm of diagnosing and treating mental health disorders in clients also diagnosed with Autism Spectrum Disorder (ASD).

Autism is an Operating System

As a clinician it is important to understand that autism is much more than a diagnosis. Autism is a way of being. It is like being blind in that we cannot separate the blindness from the person, but the blindness – or in this case, the autism – defines the person. As an autistic I see, experience, interact with and give back to the world as an autistic. Autism is my operating system. It defines me.

Autistics have a different operating system than typical people. This is not good or bad. It is just different. Think of PlayStation and Xbox gaming systems. Some gamers prefer one to the other, but most gamers like owning both. This is because some games can only be played on PlayStation while other games need an Xbox system. Neither gaming system is good or bad. They are just different systems.

The majority of the people in the world, because they represent the biggest number, are defined as “typical” and we can say they have a typical operating system. Those with autism are in the minority. They are not wired with a typical operating system. Instead they are wired autistic.

Medically and diagnostically speaking, anything not typical is atypical. This is most of the time helpful, but when it comes to autism it has not proven to be very helpful. Most of the times in the medical field when atypical can be changed into typical this is a good thing so that is the goal whenever feasible. Thus, for years we have tried to change autistic people (whom we assumed to be atypical) into typical people by trying to make them behave like typical people. In the process we have learned that we cannot change the operating system. Autistic people have an autistic operating system.

When Clinicians Don’t See the Autism

Today, autistic people, just like the population at large, find their way to therapy when symptoms of depression, anxiety, OCD and other diagnoses become problematic to them in their daily lives.

As clinicians we need to understand the autistic operating system – in other words, to see the autism – if we are to be helpful to our autistic clients. When we do not have a strong grasp on this the results are that our clients are not served well. Clinicians without a good understanding of autism generally sort things out in one of two ways:

  • It’s All the Autism

When a client has been previously diagnosed with ASD it is common for mental health clinicians to attribute all psychiatric symptomatology to the autism, which often results in autistics not being diagnosed or treated for comorbid mental illnesses when warranted.

  • Can’t See the Forest for the Trees

Another example is our clients who have multiple psychiatric diagnoses for which none of the typical treatments have been effective in lessening symptoms. These clients’ individual symptoms are sometimes collectively better known as autism, but because the autism hasn’t been recognized we miss the boat in rendering effective treatment.

Conclusion

When clinicians do not have a good understanding of the autistic operating system they tend to lean toward one of the two above examples, neither one being helpful in supporting therapeutic progress of autistic clients. The Autistic Operating System, Part Two will delve further into this topic. Stay tuned in this is an area of interest.

(Note: In my practice I see clients who happen to be autistic. Their autism is usually not the reason they seek therapy, but it certainly affects how the therapy for their depression, anxiety or other presenting symptoms is delivered. When mental health therapy is delivered in a usual manner and not based upon the autistic operating system of the client it generally is not very effective.)

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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 May 4, 2017
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Mental Health Therapy and the Autistic Client: Establishing Context

Background Information:

The autism neurology gets hit with elements of confusion, chaos and change as a person goes through their day. How this happens is different for each individual on the spectrum. For example, Brady’s neurology startles to a touch on the arm, DeShawn’s neurology reacts adversely when it perceives a surprise change in the therapy room such as new curtains and Aysia’s neurology delivers a punch when her therapy routine was altered by Grandma bringing her rather than mom.

Each of these individuals was abruptly thrown into a situation with an element of unexpected surprise. It doesn’t matter whether the surprise was good or bad or whether it was a big or small surprise. Most of the time these surprises do not even consciously register, meaning the individual doesn’t even think about them. That is why it is important to understand that it is the neurology that gets hit with the unexpected surprise. This surprise, whether a good or a bad surprise, is often perceived by an autistic neurology as confusion, chaos and change.

For the individual this is most of the time experiential rather than cognitive. It is why they are not able to tell you. Even so, you can see it when it has happened because when the neurology is hit with elements of confusion, chaos and change it has the effect of knocking a person off kilter! We definitely can see these results. Brady jumps up out of his seat after an unexpected touch on his arm by another group member walking by, DeShawn won’t enter the therapy room the first time he notices the new curtains and Aysia is giggly and cannot settle down to any therapy work.

Establishing Context During the First Session

The experience of confusion, chaos and change can be managed in a context of predictability, sameness and routine. This is why it is important to construct therapy sessions using a framework of predictability, sameness and routine for our autistic clients, regardless of their comorbid mental illness or the therapy goals we are working on.

We can do this beginning with the very first session. Here is an example, using a recent intake session for a client who would return regularly.

Zak, 17 year old high school senior came with his parents for intake. Previous paperwork had been filled out and returned so I knew Zak wanted help with getting homework done, stopping online game playing when he wanted to be finished and not having his mom get him up in the morning.

At the start of the session I explained the therapy hour was 50 minutes and set the visual timer to coincide with the end time of therapy. I explained that each time Zak came I would stand the therapy session clock (visual timer) up on the filing cabinet and we all would know that when the red was gone our work for the day would be over.

I then used a dry erase board to list the activities of the session. I wrote down understand and sign Informed Consent, understand and sign Cancelation Policy (two forms that had not been returned with the rest of the intake packet) and list at least three therapy goals. I drew lines with bullet points for three goals (since I knew the three items from the intake packet) and then by the fourth bullet point lines I put a question mark. This visually left space in case anything new came up during the session. In addition I wrote Treatment Plan at the bottom of the list on the dry erase board.

Zak asked if he could have the dry erase board and he put it on the arm of the couch next to him. After each of the first two forms was signed I told Zak he could cross out or erase that item. He chose to cross out each of these items as they were completed.

I then had both Zak and his parents tell what they hoped Zak would get out of coming to therapy. This discussion took up the bulk of the session. Near the end of the discussion I asked Zak if he would like to write the therapy items on the dry erase board or if he would like to tell me and I could write the items down. Zak responded by picking up the dry erase board and writing in what he wanted to work on during sessions and the items corresponded to what had been expressed both during the session and on the intake paper work that had been sent in. The items Zak wrote on the dry erase board were incorporated into his Treatment Plan.

By using a visual timer to track the session and allow us all to see the ending that was coming along with using the dry erase board to write in the agenda for the therapy hour I was effectively setting the context of predictability, sameness and routine for future therapy sessions. This is one easy way to establish that context and I often use it in mental health therapy sessions when the client happens to be autistic.

Additional Ideas

Other examples of establishing and using a context of predictability, sameness and routine include, but certainly are not limited to:

  • Setting timer and having client write down what topic they wish to discuss that day (for clients who are readily able to express themselves by talking).
  • Having three activities, each of which will move the client along in working toward their therapy goals and client gets to choose which one to do first, second and third. Client erases or checks off each activity upon completion.
  • Some clients need more of a choice so I might show two choices per therapy goal. For example, if the goal is to identify feelings (8 year old client) the choices might be to play a feeling game or to do play-acting (where an assigned feeling based scenario is acted out between therapist and client). Either of these choices would move the client along toward this therapy goal and yet give the client a choice between two activities.
  • Using the framework of a sentence at the top of a blank piece of paper such as:Today I want to show and/or tell you about: ____________________________

Conclusion

Regardless of how you choose to establish a context of predictability, sameness and routine with your clients, it will go a long way in supporting your client down the road when more difficult topics tend to arise during the course of therapy. I have had some clients report to me they were able to bring up emotionally charged topics because they could see the timer and know when the session would end. Others have reported they thought about what they would write on their paper ahead of time and could do so because of the familiarity of doing this at the beginning of each session. One client told me the paper gave him a place to put his thinking words.

(Note: In my practice I see clients who happen to be autistic. Their autism is usually not the reason they seek therapy, but it certainly affects how the therapy for their depression, anxiety or other presenting symptoms is delivered. When mental health therapy is delivered in a usual manner and not based upon the autistic operating system of the client it generally is not very effective.)

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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 29, 2017.
Click here to comment.

Realities of Being an Autistic Therapist

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.

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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 August 8, 2016. Click here to comment.