Category Archives: Activism/Advocacy

Providing Sameness and Routine While Living In Unfamiliar Surroundings

Many children with special needs thrive in an environment with a high degree of predictability, sameness and routine. In the aftermath of a natural disaster life is anything but what our kids need to succeed. Often entire families, neighborhoods or communities are in the flux of confusion, chaos and change and will be for quite some time to come. Putting sameness and routine back into your child’s life as quickly as possible will be helpful. How can you do that when you have no idea what life will hold for you and your family in the days ahead? Here is one simple strategy that can be used in many different ways:

Visually mark what belongs to your child. You can do this with masking tape, stickers or a washable marker. When everything is new and living spaces are suddenly shared it becomes difficult for children to understand boundaries. I wore a roll of masking tape around my wrist for several days while in a shelter. I used it in a variety of ways. The more I used it, the more my children came to understand that when they saw the tape it meant “this belongs to me” or “this is where I can be.”

Visually Define Space:

  • Put tape on the floor to define boundaries of your family’s sleeping space, your child’s play space, etc.
  • Put a blanket or sheet on the floor to visually define a play or homework space, knowing that while the actual place to play or do homework may change, the sheet or blanket can be a constant.
  • I put tape on the chair where my kids could sit for meals – the chair was always a different chair and in a different spot, but putting a piece of tape on it right before my child sat on it visually defined the space and provided a sameness and routine of sorts.
  • One child was so disorganized as to need a piece of tape on his plate and cup in order to eat and drink.
  • If using unfamiliar bathrooms are problematic get and use a potty chair. Put tape on the potty chair if needed. Great if the potty chair can be used in the bathroom, but in reality it is more important that your child use the potty chair than where the potty chair is located.

Visually Mark Belongings:

  • Staying hydrated is more important than eating solid food in the short term. If bottled water is provided try to get a half dozen of the same bottles to keep. Each day the kind of bottled water available may change. If you are using tape, stickers or markers put them on these bottles of water. When the bottles are empty you can refill them from differently labeled bottle water if necessary in order for your child to accept it as something that belongs to him and increase the likelihood he will stay well hydrated.
  • Children may, out of necessity, need to get used to a whole new wardrobe all at once. Some things that may be helpful when choosing from the clothing immediately available include choosing the softest fabrics (second hand clothing often is more acceptable on sensitive skin than new clothing). Sweat suits in cold weather or t-shirt/short sets in hot weather can serve as both clothing and pjs eliminating the need for your child to change out of pjs if that is an issue. Many times new clothing will be donated at shelters. If possible choose several days worth of the same outfit for your child. This means he will have many days of new clothes, but each outfit is exactly the same. If purchasing new clothing several of the same outfit in different colors may be helpful in that your child will have several outfits that all feel the same to wear. Sweat suits or t-shirt/short sets can eventually become pjs in the weeks ahead as you introduce new outfits for daytime wear.
  • If your child has become used to having things marked with tape or markers you might also mark his clothes so he can feel like he is indeed wearing his own clothes, as evidenced by the tape or marker spot. These markings can be placed on the front inside hem or on the outside if necessary for your child to have it visible without needing to flip the hem over to check. Put the same mark in the same place on every outfit.
  • When your child receives toys, books or personal care items such as toothbrush and comb you can also mark these items to visually identify to your child that these items belong to him.

These are but a few ideas to get you started in bringing some predictability, sameness and routine back to your child even when, in reality, there seems to be no anchor in your daily life just now. Visually defining space and marking belongings can go a long way in helping your child make sense of the confusion, chaos and change that comes with picking up the pieces after a natural disaster.

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BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 October 16, 2016.
Please leave comments here.

 

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 AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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.

Teaching Autistic People

Just like people of all ages can learn, so is it that autistic people of all ages can learn. It is an utterly sad state of affairs that this even needs to be said, but unfortunately, it needs to be said. Too often I see autistic children being babysat rather than being taught at school. When I ask about academic curriculum being used, I am told, “Oh, he has autism” as if this is an answer to my question.

In my work as an autism consultant I am called on to go to public schools to see autistic students who are thought to be failing what the system has to offer. Most of the time students I see have behaviors that don’t work well in a school setting. For all students I am called in on, I use the stabilization techniques below, which are also the first steps I use when teaching autistic students if the student is not stabilized. This is why I can say that even when your student has autism, including when behaviors are present, he can learn just like any other student can learn. Autistic people are just as deserving of an education as other human beings. That being said, specific supports must be in place to insure access to that education. After all, nobody can do math (or any subject) when they are literally bouncing off the wall (a sign of extreme sensory disregulation).

Stabilization

  1. Internal Regulation (sensory diet)
    Autistics have a neurology that means many systems (sensory, emotions, movement) in their body do not automatically regulate. This means conscious attention and effort must be brought to regulate whatever systems need regulation. For most autistics I work with, the sensory system is so disregulated that it masks emotional and movement disregulation.

  2. External Regulation (interactive visual schedule)
    It really helps to know what is going to happen when – the schedule of events.

    Most students have a neurology that can pick up this sort of information without being instructed. They can sort out the spoken words of the teacher. Students with autism typically have weak auditory processing abilities. Their neurology may not allow them to take in verbal words, sort out which words are relevant and process those words to understand what will happen next. This means every transition from one activity to another can hit them as a huge surprise, causing further disregulation.

    When typical students are distracted and miss the teacher’s verbal instruction of “get out your math books now” they usually become aware that the other students are getting math books out of their desk so they know they are meant to get out their math books too. Autistic students do not pick up these external cues as readily.

    Even when they see other students getting out math books, autistic students do not necessarily take that to mean they should also get out their math book. This has nothing to do with cognitive ability. It has to do with weak connections between areas of the brain – several areas of the brain working together to synthesize environmental, social, emotional and other kinds of information to inform them “I need to get out my math book.”

    Visual schedules support this issue for most autistic students. It is often helpful for the schedule to be interactive – meaning the student needs to do something with the schedule before each transition.

  3. Relationship
    Most students I have been called on to consult for have experienced much angst along the way. They know they are not like other kids. They may or may not know they have autism. One thing I find is that students who are able to communicate are very aware they are different from other kids and they have made up a narrative to explain their differences to themselves. I have been honored by a number of students sharing these stories about why they are different. I have yet to hear a positive story. They are typically stories about major character flaws, sometimes character traits they have heard others ascribe to them such as lazy, stubborn, willful, violent, refuses to share, refuses to co-operate, etc.

    As I begin working with new students I typically use a simple interactive schedule to show them “work” and “sensory break.” I ensure they are successful at following this schedule even if it means we work for a few seconds and engage in sensory regulating activities for a much longer time. I am visually instructing how schedules work while getting the student’s sensory system regulated and doing that in the context of forming a positive relationship.Most students I see have not experienced a lot of positive relationships. They have learned not to trust others around them. I am giving them an exact visual way our time works. They can count on it, become part of it and will always succeed. Over time strong relationships develop. Once a relationship is solid, we know what sensory activities are needed (along with how long and how often) and the student has mastered his interactive visual schedule I know he is now stabilized. Once stabilized we are ready for more formalized instruction.

Instruction

  1. Identify and Teach Needed Skills
    Besides academic instruction, students with autism often have particular skills for which they need to receive direct instruction. This can be anything from how to open a milk carton to waiting for the teacher to call on you when your hand is raised before contributing. It is helpful to identify a few of the skills that are deal breakers to your student getting along in the classroom. Learning and using these skills can be intertwined with academic content and other parts of the day.

  2. Ensure Success by Decreasing Task Demands
    Differentiated Instruction is one way to reduce educational task demands to match the needs of an individual student while ensuring them opportunity to learn along with their peers even though he may not have the same personal resources to bring to the task. My favorite person when it comes to differentiating instruction is Paula Kluth. Every student can do something. If you need ideas on how to use general education curriculum for students with autism who you think cannot do general education curriculum please look up Paula’s work. (paulakluth.com)

    My favorite people when it comes to a discussion about decreasing task demands are Ruth Aspy and Barry Grossman. (www.texasautism.com) An example of decreasing task demands for a student who struggles with handwriting is to take handwriting off the table in all subjects except Handwriting Instruction. Perhaps a scribe is used to do the actual handwriting task or an app such as Dictation Dragon, which means he can now do creative writing through dictation. If the student is an efficient typist perhaps that is the way to go, which means the student can now do social studies assignment that involves answering questions with a paragraph.

  3. Reinforcement
    There is significant brain research that shows students with autism do not benefit from the same kind of social reinforcement that typical students do. For typical students, in general, the more social opportunities you can add into instruction and use for reinforcement, the more learning that takes place.

    For students with autism, social reinforcement and adding social aspects to learning detract rather than enhance learning. Tangible reinforcement tied to learning has been shown to work better than social reinforcement. In fact, it has been the ticket to learning for many autistic students.

    NOTE: I realize ABA therapy has had a history of using reinforcement in a punitive manner tied to repetitious drilling, often quite disrespectfully. This makes punishment, demeaning drilling and disrespect wrong. It does not make reinforcement wrong. All human beings benefit from positive reinforcement.

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BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 in June 2016. Add a comment here.

 

Autistic People: Persons or Projects?

Autistic people experience the world differently than non-autistic people experience the world. One reasons for this difference is the autistic sensory system is quite different from the neuro-majority, which is considered the norm. In addition, the autistic thinking style has differences from the neuro-majority norm.

Autistic Sensory and Thinking Differences
The autistic sensory system takes in information from the environment. This information can come in too big, too small, delayed or distorted. Autistic thinking style is often visual, concrete and many have a thinking-in-pictures style of their own. This means processing can happen visually rather than with words. The processing typically does not happen in real time, but can be delayed for moments or for days or longer. Information storage may not be category based, but instead arranged according to unique schemata. This may make the path of retrieval of stored information take longer.

Example: One time I was in a conference-planning meeting at a new venue. We had just returned from a tour, served ourselves refreshments and gathered at the conference table to discuss business. Out of the corner of my eye I saw a bug walking across my shirt. I snatched up that bug and held it out at arms length pinched between my index finger and thumb. A friend sitting next to me asked, “What’s the matter?” to which I replied, “Bug!” She snatched the bug out of my hand and dropped it on the floor.

In the meantime, with my arm still outstretched as if I was continuing to hold up the bug, my autistic brain was busy processing the bug information. My brain thinks visually. I have a visual bug category. It looks like an old fashioned Rolodex where we used to store names and phone numbers before society went digital. My bug storage Rolodex was automatically flipping through the pictures – one bug picture after another. I must say, I am an old lady – at least old enough to have accumulated lots of bug pictures! It takes time to flip through this size Rolodex, looking at each bug picture.

I did not tell my brain to do this, but it is simply the way my brain does business. My brain automatically goes for the match in order to label and thus sort an experience. I needed to look at every bug card in the Rolodex to come to the fact that the bug I picked off my shirt was not a bug at all – it was a peanut skin! I must have dropped the peanut skin onto my shirt when I was eating the peanuts on the refreshment table!

Resulting Behavior
All of these many sensory and thinking differences often mean that the autistic person will exhibit behaviors that people around them find unusual simply because they do not share the experience of an autistic brain. These behaviors are not right or wrong. Instead they are what naturally flow out of an autistic brain. As such, the behaviors do not need to be changed if they are not hurting anyone. Instead, the target of change for behavior that is merely different is not the person exhibiting the behavior, but those around him so they might understand the behavior.

In the above example my holding up the “bug” while waiting for my brain to process the information did not need to change. Instead, people around me needed to be educated in why I was doing what I was doing. What actually happened is that most people ignored me and went on with their meeting. The friend sitting next me did what she thought might be helpful – taking the invisible “bug” and flicking it on the floor.

Societal Response
In situations such as this where an autistic person’s behavior is unexpected, people generally try to be helpful.

Person or Project?
If non-autistic people understood autistic behavior as a natural, reasonable response to the working of an autistic brain it would allow them to have a different response. Right now most people respond to unexpected autistic behavior with the assumption that it is wrong behavior and thus needs to be fixed. When this is the case the autistic becomes a project to be worked on – someone who needs instruction or punishment (depending upon your persuasion) so they can be made to look normal. The underlying assumption is that it is best to look normal. Nobody seems to consider the damage this does over time to autistic people. Thus, it has come to be that most of society views autistics as projects to be worked on so they might change.

I am hopeful that as people come to understand the autistic brain has many differences with resulting behaviors. This blog is addressing most autistic behavior – the behavior that is not hurtful or harmful – the different behavior. (Occasional autistic behavior is harmful in that it hurts somebody or seriously damages property. This blog is not addressing this category of behavior.)

I am giving neuro-majority people a pass – you all no longer need to take on correcting our naturally autistic behavior! Instead, approach it with kindness. Know we are responding naturally in light of our autistic brain. Just like you do not owe us an explanation of your everyday behaviors, so is it that we do not owe you an explanation of our everyday behaviors. Some of us can explain our behavior at times and others cannot. Some of us want to explain our behavior (and have differing levels of access over time to do so) and some of us don’t. Please be respectful and patient.

Also know that because you are the majority you get to bestow upon us the status of “person” or “project.” Unfortunately, even though autistics have long ago decided they are people and not projects, it does not change society’s view. Only the neuro-majority has that power to change societal view of autistics from “projects” to human beings. Ultimately, we welcome you to view us as fellow human beings rather than projects to be continually worked on. This will be more fun and more rewarding for all of us!

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BOOKS AND DVD BY 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). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). 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 In June 2016