Category Archives: Communication

Autistic Adults Do Not Look Like Autistic Children

March 23, 2015Autism and Aging, Autistic "Behavior", Communication, Growing Up Autistic, Sensory Solutions, Social Considerationsadmin

I recently presented to a room full of people on the topic of Autistic People and Literacy. A few days later I again presented to another group of people on another autism related topic. It doesn’t matter the autism topic or whether the group I am presenting to be educators, therapists, or parents of children with autism – I am almost always approached by someone wanting to know how it is that I do not look or act anything like the autistic children they know.

There are many reasons autistic adults do not look like autistic children. Here are some to consider:

1. The first reason is that all children grow up. Adults, whether autistic or not, generally do not behave in their everyday lives the same way they behaved as small children. We all grow and change with maturity. Autism does not prevent a person from growing and changing over time.

2. Autism means, in part, developmental delay. When we are children this delay can be huge, making us look very different from our same-age peers. However, delay does not mean stagnant. It simply means delay. Developmentally appropriate things that cannot be done at the correct age can often be accomplished later in life. Typically, this takes a lot of support and effort, but over time that support, effort and direct instruction tends to pay off, as we grow older, being able to do many things than we couldn’t as a youngster.

3. Autism means there are communication challenges. Even so, everyone communicates, including nonspeaking autistics. Challenges are the biggest when they are the newest. Over time communication challenges can be addressed, accommodated and supported. This takes time and much effort. The result is that the communication challenges seen in a 3 year old or a 12 year old will likely not look the same when that child is 30, 50 or 70 years old.

4. I personally have not met any autistics (and I have met a lot of people from my tribe) that have not been challenged by their sensory differences. Again, the challenges are the greatest when we are youngsters because we have not yet learned how to manage our sensory system in a world that is geared for people with “typical” sensory systems. By the time we are 40 or 60 years old we are more in-the-know and can plan for meeting our own sensory needs much better than we could as youngsters.

5. Autistics want friends just like everyone else. As youngsters, most of us do not have the skills to make that happen. Also, children are grouped together according to age and due to our developmental delay we are often not social peers with same-age children. This compounds the difficulty in making friends. Early adulthood can be especially challenging as we are often socially and emotionally at a much younger age than people expect when they look at us. It is often taboo for young adults to have friends who are children, even when the young adult is the same emotional age as a 10 or 12 year old. It takes a lot of years for this to get better, but it can and does get better for a lot of autistics. Just think about it – it would be considered “inappropriate” for a 22 year old to befriend a 14 year old because of the eight-year difference, but when you are in your 30’s or 50’s nobody cares if there is an eight-year or more difference in age between friends.

These are just a few of the reasons why autistic adults do not look like autistic youngsters. In my case, there are a few more points to consider. Not only am I autistic myself, but autism is my profession. I work in the field, have written several articles and books and have made more than 300 presentations in the States and internationally. To do my work I must be diligent in my sensory regulation every day, I have mentors who I can turn to around communication struggles and other challenges, and I generally know what I need and how to ask for it should the occasion arise.

Even so, I am just as autistic as ever. I no longer live in an institution or use body slamming to communicate my needs. Over the years I have learned to work with my autism, honoring who I am in this world. Some days I am better at this than other days. I am nearing retirement now and when people approach me and are befuddled that I do not look anything like their autistic youngster these are the things I would like them to consider. Yes, autism can be difficult. I know. I live it everyday. It is my life. It is my profession. Yes, I agree – autistic adults do not look like autistic children. It is because autistics have unlimited potential.

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 February 23, 2015

High-Functioning or Low-Functioning?

March 1, 2015Activism/Advocacy, Communication, Social Considerationsadmin

In this life I am missing the ability to go out into the world and just be accepted for my natural autistic self. I must inhibit so many of my natural responses just to fit in enough for others to allow me a place in the world. I have discovered that to have a place in this world I need to fit into it in a way that makes sense to the majority. For me, this isn’t a good or a bad thing – just merely the way it is. Fitting into the world is something I need to balance with the essence of my being so as to come out in the most positive manner possible.

A few years ago I took a pottery class for adults – not disabled adults – just plain ordinary adults. I explained my obvious-at-the-time movement differences in terms of my autism. Several weeks later out of the blue, a fellow potter asked, “So Judy, are you high-functioning?”

In the context of working on my hand built sculpture, surrounded by others using potter’s wheels I replied, “Some days. And you?”

My question was never answered. Only silence followed. It wasn’t until I was on my way home that I figured out the question was meant to be in reference to my autism – not to my sculpture building abilities!

Many times when I disclose my autism the first question I am asked is whether I am high-functioning or low-functioning. People are not at all meaning to be rude, but rather, just trying to understand what they think is important about me.

In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life.

Even though high-functioning is not a real thing and even though I am embarrassed to admit this, I would rather be seen as high-functioning than as low-functioning as this somehow has come to mean that others see me as a better human being. I have discovered the more I can look like a neuro-majority person the more opportunities I am given in life.

I now manage my own business that includes quite a bit of traveling and public speaking. By planning several days of quiet downtime before traveling I am able to inhibit my natural tendencies and perform for up to several days at a time. While this is great in that it enables me to be a financially independent human being, it also makes me to understand that the real of me is largely unacceptable in society at large.

This real of me is nothing more than my low-functioning ways! Some of my friends tell me that I do not need to inhibit my natural self when I am with them. For these friends who tolerate the real of me – even though they want to tolerate it – it is difficult for them. In addition, I have learned along the way that if I take them up on their offer that they, in turn, will limit their time with me because my natural ways exhaust and drain them. They are not bad people – it is simply the way their neurology as a neuro-majority person plays out for them.

To me this is one of the hardest things about autism. It is hard for everyone. And yet, I have some real friends in this life. Together, we tend to adore each other’s essence – that “stuff” that makes us who we are – while working out the challenges that physical proximity often brings to our friendship. We may not always look like typical friends, but we connect by the steel-strong threads that run between our souls. It is this connection that makes the meaningfulness in our friendship rather than our outward social graces.So, high-functioning or low-functioning? It is often the first question asked when my autism is disclosed. I now answer, “Yes, I am.” It is the truth and it weeds out the interested masses from a future potential friend!

Suggestions for Supporting a Child to Fit In While Valuing Who He Is

Implement planned down time before outings or events where your child will be required to be around others.

Think through options of how your child might “fit in” so that he is more likely to succeed in a variety of ways rather than to fail if he is not able to act as the world expects.

Example: At a family gathering options might include:
1) being in the main area of the house interacting with the guests
2) sitting off to the side in the main area of the house playing on his iPad
3) inviting one cousin to play iPad games on the extra iPad in the den that has been closed off to guests.

Provide opportunities for your child to participate in social events that are neurologically friendly to him such as visiting a sensory friendly Santa or going to sensory friendly movie theater. The idea is to balance the “fitting in” with times of honoring who he is, setting up enjoyable opportunities that don’t include the challenges that make it difficult for him to fit in with crowds.

Remember being social is not rewarding in and of it self for most autistics. It is hard work. Consider rewarding this as you would reward any accomplishment of hard work.

Provide access to other children on the spectrum so your child can experience a sense of community while free to be himself.

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 February 1, 2015

Communication Supports for Speaking Autistics?

December 17, 2014Communicationadmin

As an autistic, I know first hand how my communication abilities are different from the neuro-majority people around me. Most people do not understand my differences because I can speak. On the surface my communication abilities appear normal. This make it very difficult for people to understand when I need accommodations they are just that – accommodations – not personal preferences.

For example, even though I can speak to crowds of thousands of people my neurology does not permit me to engage in telephone conference calls in a meaningful way. The most I can do is listen, but after a few minutes I cannot process the words of the several different voices I can hear over the phone line. Actually speaking on a conference call is not something I am able to do.

I have found some online video chat alternatives that do work for me and allow me to participate in national work groups. It is necessary for me to see the people and to have the person talking visually highlighted so my brain can process the words that are being spoken. Also, I need to be able to type my words because I am not able to access meaningful spoken words when tracking and processing the talking of the group. Group Skype and Go To Meeting are two platforms that allow me to participate.

It is difficult for people to understand that a person who speaks internationally would find it impossible to participate in a telephone conference call. I totally get this because I too find it difficult to understand! Even though I have lived in my body for more than 50 years now, I still do not always understand it, but have learned to believe it and work with it, outsmarting the difficulties of autistic neurology to be and do what I want in this world.

My communication abilities and efforts are what they are whether you chose to believe it or not. I understand and can say this because for many years I did not believe my own body could betray me so often. However, I discovered that not believing in it never once changed it.

At one time people did not believe the world was round. They believed it was flat. The erroneous belief did not change the facts. Today when you have erroneous beliefs about me it does not change who I am. It does not change what skills and abilities I am able to access in the moment. Unfortunately, the beliefs of the majority, erroneous or not, often determine my opportunities.

This is because the majority holds the power in bestowing upon the minority. The assumed power of majority makes you superior, whole and right while making me less than, broken and wrong. You and I do not decide these things, but they are the societal assumptions we live by. In fact, you don’t even have to think about it, but if you do – whether you like it or not – being part of the majority gives you power over the minority. How do you use your power?

Do you honor autistic difference or do you insist your child do things exactly the way other children do them?
Do you try to find accommodations that will allow your child to participate in what you ask of him or do you express displeasure in or discipline him for failure to perform a task he has previously mastered assuming it is willful behavior?
Do you believe your child cannot do something when his access to skills and abilities are intermittent or do you assume that once a skill is performed your child is being stubborn or resistant if he cannot perform it consistently?

Many adults fear that if they listen to their child’s behavior or words they will be “giving in” and spoil their child. They fear their child may get away with something. After all, how do you know when it is the autism and when it is behavior? In my experience it is rare that it is only behavior. Instead, it is most often a function of autistic neurology – the way a person with autism understands and interacts in the world.

But even if you remain skeptical, the least dangerous assumption is to believe it is the autism. If you assume it is the autism and you are wrong your child may “get away with” some behavior until you get it figured out. If you assume it is willful bad behavior and you are wrong your relationship of positive regard and trust with your child will have suffered. Your child needs you to be on his side, to believe in him. When you don’t believe in him you effectively silence him.

Just because majority power has been used to silence autistics since the beginning of time, especially when it comes to our communication differences, doesn’t mean we need to continue on this course. People changed their belief about the world being flat when they saw it was not true.

I have hope that people will someday change their beliefs about how autistics communicate when they see what they believe is not the truth. It is why I am writing this blog! In the meantime, please know all autistics are human beings – whether able to speak or not we communicate, we have feelings, we have empathy, and just like you we need to love and to be loved – whether you believe it or not.

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 November 6, 2014

Autism and Holiday Schedules

December 11, 2014Communication, Visual Supportsadmin

As an autistic getting through the holiday time can be quite tricky. As an autistic parent with children who had different needs it was even trickier. Routine and structure can go a long way! They anchor the days that can otherwise be perceived by an autism neurology as totally chaotic, which in turn, often leads to being overwhelmed and experiencing meltdowns.

1. Start by creating a visual schedule. You can simply use paper and pencil or use an iPad or computer to make your visual schedule. Words can be visuals for readers. I will use words here, but the words can also become pictures for nonreaders by simply taking a picture of the activity.

Directions to make the visual schedule I like to use:

Materials: two different colors of construction paper, sticky magnetic strips, scissors, marker, refrigerator or any surface to build a magnetic schedule such as a cookie sheet.

First, put a sticky magnetic strip on the backs of two different colored pieces of construction paper.

Then, cut the paper into strips, by cutting where you see the dotted lines in the diagram below.

Next, write the stable routine things that happen every day onto the fronts of one color of strips. Using the other color of strips write in the novel activities of the day.

2. Place the visual schedule strips onto a magnetic surface (such as a refrigerator or a cookie sheet). Line up the days activities in the order they will happen. Start by anchoring the day with the stable routines that happen everyday such as getting dressed, brushing teeth, mealtimes, bedtime routine and whatever else you do every day. Leave space for the chunks of time between the stable routines for the changing or novel activities. Lining up the schedule this way allows everyone to see the stabile routine – in this case the green strips – that reoccur each day. It also gives structure to allow for incorporating the novel activities that occur during the holiday season.

3. Use this visual schedule by putting in the routine things you know will happen along with the novel activities you are planning on doing and leaving spaces for chunks of time during the day you do not know what activities may occur. For example, sometimes you will not know in the morning what activities will happen between lunch and dinner, but you have made a visual space – a placeholder – where the activity can be inserted when the time comes. Other times you may have put an activity on the schedule such as building a snowman, but when the time comes it cannot happen because a relative stopped by to visit. When this happens you can show how building the snowman can be moved to another spot or maybe another day and visiting relatives will happen just now.

4. Typically, the schedule can be built in the morning, but some children benefit from building the schedule for the next day at bedtime so they know what is coming in the morning. Use this visual schedule in the way it benefits your child most. Think it through before you begin as many children will not want to change the way the visual works once they have started using it.

With a visual routine and structure in place novel activities are more likely to be accepted with meltdowns minimized. A happier holiday is likely to be had by all in the family!

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 December 10, 2014

Autism, Differences and Murder

November 25, 2014Activism/Advocacy, Autistic "Behavior", Communicationadmin

Ever since the not guilty verdict in the George Zimmerman trial and more recently, after a police officer shot and killed Michael Brown, I have been and continue to be very much afraid in the pit of my stomach. The not guilty verdict for George Zimmerman and the dragging on of the no fault attitude in Michael Brown’s shooting for months with a resulting “no charges to be filed” in regards to the police officer who shot and killed him underlines the fact that in our society it is perfectly ok to track down, shoot and kill someone perceived to be acting different.

We fear people who are different from us. Differences come in many forms. If you are White then someone Black is different. If you are neurotypical then someone autistic is different.

The majority is considered the norm and they hold the privilege and power. This can be in regards to race, ethnicity, sexual orientation, gender and neurology or almost any area where you can find a dividing line among people.

I am autistic and have known all my life that my neurology is considered to be “wrong” by the majority. It is easy to know this by simply looking at almost any of the therapies out there for autism where the measure of success is in terms of how neurotypical an autistic person can come to look.

I think this measure is a wrong measure and I believe it to be a huge betrayal of autistics. Today I have the new understanding that even though it is fundamentally wrong to make autistics act as if they are who they are not…well, it also may be life-saving if they should meet up with the George Zimmerman’s of the world. In fact, even having a chance encounter with a police officer could mean an autistic gets to live only if able to act neurotypical.

Many autistics look and act different because they have a different neurology. Some of us have spent a great deal of time and effort to learn to look in a way that allows us to fit in so that we might have more opportunities in this world. But even on our best days we can become easily overwhelmed as our body betrays us when sensory input, emotions and movement do not automatically regulate and serve us well.

We have learned to cope. Some of us wear hoodies and noise cancelation devices to cut down on sensory input. This makes us look different. People become afraid of us because they assume we are up to no good.

Some of us regulate by stimming. This can include, pacing, muttering a phrase repeatedly, hand flapping, rocking or a variety of other repetitive movements or phrases. This makes us look different. People back away from us because they are afraid.

Many of us do not look people in the eye because it is painful or overwhelming to us. Some of us do not have reliable use of spoken words when we are under stress and others of us never use spoken words. It is assumed we are shifty, sneaky and not to be trusted. Others become afraid of us.

All of my coping mechanisms to cut down on sensory input and to regulate my sensory system, emotions and movement are things that make me look different from the norm. My coping mechanisms can make me look scary to others, but if I don’t stay regulated I will only look scary sooner.

I have been told that I am one of the lucky ones – lucky because I have an awareness of how I am perceived as different and scary when I am overwhelmed. Many autistics do not have this awareness. There are others who are aware, but do not have the ability to inhibit their natural autistic self for several hours of the day.

The stakes are high. They always have been. An autistic under stress can look scary to the general public. I feel so bad when other people are afraid of me only because of how I look different. But now I know that the stakes are even higher than I thought.

You see, it doesn’t matter the bazillion of times I or other autistics act correctly in the eyes of society, but the one time we are not able to inhibit our own self is the time we could be killed for who we are – a human being with an autism neurology. If another person is carrying a gun and thinks we are up to no good or is afraid of us he is allowed to shoot us.

I feel horrible for even having to think this way, let alone write about it – and yet, it has become the society we live in. I have known all my life that I am different. People do not understand autism. People fear what they don’t understand. George Zimmerman’s jury came back with a “not guilty” verdict. Trayvon Martin, Michael Brown and all the others shot because they were Black will not come back to life. Being perceived as different got them shot and killed.

Today I know that society believes it is ok for anyone who is afraid of my difference to follow after me, shoot and kill me. This is why I am much afraid in the pit of my stomach.

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 October 12, 2014