Author Archives: lindaacar

From A Parent’s Perspective

To those who provide support to adults with Autism, I know that parents can be perceived as being over-protective and hard to please. I can understand, at times, that from their perspective, we may be perceived as such. I want to share with you my experience in parenting my son, who I love very much. My hope is that it will be helpful to all adult service agencies and support staff working with individuals with Autism, in understanding a parental perspective.

Let me start out by saying that I feel that most support staff see my son as a likeable guy. I also think that most support staff have his best interests at heart. They have enjoyed him, and want him to be safe and healthy. They have been well trained in safety techniques, and for that I am deeply grateful. I also understand that the developmental disability system does not pay support staff commensurate with their responsibilities, and that staff shortages make their job harder and more stressful. I do not leave the need for higher salaries unmentioned when I advocate for better services. In fact, the need for professional pay is at the top of my list as I address my senator and representative.

I have always tried to voice my appreciation to support staff for the work they have done or presently do to support my son. I hope they know that I am sincere. I also know that I am far from perfect. I can express myself at times in an impatient manner. At times they have done the same. There are times I am more stressed out than others. We are all human. If at any time I have offended any staff, I apologize. That was never my intent. I also want to say, from my perspective, that I feel most of the time, staff and I have interacted with each other is in a friendly manner, often with some humor mixed in.

Parenting my son, has brought so many positive things to my life…learning to communicate with and understand mostly  non-verbal communication, patience, ability to put myself in someone else’s shoes, the gift of appreciating not only what a person does but also importantly, what a person brings to one’s life just by being who they are- their gifts.. I do not diminish any of this when I say that parenting him has also been stressful. He struggles to communicate; he is very sensitive to how he physically feels. What may be a minor discomfort to us is very anxiety-provoking for him. A  more minor discomfort may remind him of a time when that minor discomfort, whether it be in his ears, teeth, sinuses, head, stomach etc., felt much worse. That causes anxiety that in itself can be very uncomfortable and desregulating. Before I developed a visual chart that could be used by him to point to how he feels, he would always respond verbally “O.K” when asked how he was feeling. Many times it was clear he was not “O.K.”. Even when the visual chart was developed, there was a lot of tweaking of how to use it most effectively with him. We have gone through some rough times in trying to figure out what was bothering him.

My life has revolved around trying to understand his needs, learning how he communicates (which is mostly nonverbal, even though he can talk for some purposes, like requesting candy).  As I described, he is not able to just come out and tell you if something is bothering him, he cannot talk about his feelings, nor does he easily share information about his day, he is not able to initiate a topic of conversation or to keep a conversation going.

My son has always needed a lot of support. He needs someone with him at all times. It was never easy to be in social situations as he often struggled with busy settings, and supporting him in being there was the priority. We did not have many vacations without him and vacations with him, by necessity had to be planned around his needs. His needs for intensive support did not go away when on vacation. Indeed, going on a vacation was not an option the last number of years he lived with us. So when it has appeared that I am “overly involved” and “overly protective”, please realize how deeply involved in his life and development I have always been. It is an unrealistic expectation for me to back off and” let go”. I feel it is important to share what I know with those who support him. I want my son and his needs to be understood and for their work to be made easier by the knowledge I share.

Now that he is not living with us, figuring out ways to be connected are evolving. For example, since a familiar and everyday routine is what he is comfortable with, I have had to adjust to him not really being comfortable at our house for the holidays. Where he lives now is home to him and his routines there are what bring him comfort. So we visit with him there on the holidays.  After all, being together is the important thing. I am letting go of things I feel are appropriate, but know that acceptance of him not coming home for the holidays has not come without some sadness.

What was helpful to me and support staff was to meet directly and talk about what I was feeling and what they were feeling. I have tried my best to see things from their perspective. But it was helpful to more clearly understand all the requirements of their job. I was able to clarify and review my son’s needs, specifically around communication and dietary restrictions. The discussion allowed for us to learn from and to feel more comfortable with each other. Misunderstandings were cleared up.

My hope is that by sharing my experience, agency management and support staff will better understand the parental perspective and that other parents will feel supported in their ongoing advocacy for their son or daughter. I think it works best when we try to “walk in someone else’s shoes” and if we don’t understand, to ask.



The Essence of a Person

A person may have Autism, but Autism does not define them. Too often all the traits that a person has, every behavior they exhibit is attributed to the person having Autism. It is like the person loses his/her personhood and becomes an “Autism”..We each have many traits but they never define us.

This is one of the messages that Eve E. Megargel communicates in her book entitled “Learning To Kiss”. In the book she shares the life story of Billy, her son with Autism, and the impact of complicated and difficult to determine medical issues he has, the manifestations of which were too long attributed to his having Autism.  Woven into the story is the growth of Billy’s abilities to be a communicator, from learning to form the physical act of a kiss as a way to develop connection, to becoming a competent communicator with a speech output device. Billy’s ability to develop his communication skills was dismissed as something he was not capable of. Fortunately, his family did not agree with that thinking, as his ability to communicate became crucial as they worked with his serious health issues.

My husband and I heard Eve speak at a presentation of the details of the family journey written about in the book.  As our son had gone through several years of pain issues due to health issues and difficulties in communicating effectively about them, we related all too well to the Magargel family’s experiences. It was an emotional rollercoaster seeing a son in pain and struggling to understand what was wrong. There is a profound grief in knowing that your loved one is not well and in pain and struggling to find answers from doctors. Thankfully, we found some doctors who were willing see our son’s behavior as communication of pain and struggled with us to find the physical issues causing the pain. Others with Autism are not so fortunate.

Early on, when an educator’s stated goal for Billy’s education was to learn to comply, Eve advocated for Billy’s right to have his education address his need to learn to communicate in more effective ways, and to be appreciated as a person rather than being defined by his Autism. She persevered in her quest to make sure that her son was not underestimated because he could not talk and struggled in a world that was often confusing and at times overwhelming.

People with Autism just like all of us, need to have opportunities to develop their skills and talent. We all want to have people take the time to understand our communication and be responsive to our feelings and needs.  We all thrive through meaningful relationships with people who value us. It takes letting go of our fixed concepts and ideas of who a person with Autism is, and what they need and being open to learn what is meaningful to them. Communication is so much more than spoken words. How we regard a person with Autism is communicated to them not solely by our words, but by how we relate to them. Eve writes about individuals in her son’s life who took the time to really see and know her son. Billy blossomed in relationship with them. Throughout my son’s life I have seen how my son has blossomed in relationship to people who are able to reach out to him in ways to which he can respond and who value him. The dance of these relationships is a joy to behold. These people will tell you they get as much as they give. Each is enriched by the relationship.

May we all have people in our lives that are there through the good, the bad, and the ugly. People who see us as we are, not as who they think we are or want us to be.

A New Chapter…


            In July our family began a new chapter in our lives…my 32 year old son with Autism moved from our family home into a group home. We knew it was time but the thought of it was difficult to contemplate… How would he react… would he think we were pushing him out??? How would we help him to understand and support him in seeing this as a positive move for him? Thought and emotions were flooding in…

We had begun to accept the need for our son to move from our home many months before the move. It is a process of coming to terms with this. It was hard to contemplate not having him at home with us. There had been no natural life progression, such as going to college, which leads to a son or daughter moving out of the family home. Beyond that, he will continue to need significant support throughout his life. It is a different journey when a son or daughter has a significant disability.

Once we accepted the need, we began the preparation process with a story about adulthood which was developed with the support of his counselor. My son has always done well with stories that have pictures to highlight the ideas presented in the story.   The pictures really help to draw his attention and keep him engaged as the story is reviewed.

We began the story with pictures of him as a baby, then a young child, then a older child, then a “big guy”, and then as an adult man. Seeing his growth visually helped him to understand the process of growing into adulthood. The story went on to describe what adults do..some have jobs, some volunteer, and they have various leisure interests. Then we introduced the idea that at some point, adults move out of the house that they have lived in with Mom and Dad. We described various living arrangements…some people live in a house, others live in an apartment or condo. Some people live alone, others live with roommates. Some people live alone but have staff that help them with things such as shopping, cooking and cleaning, and going for a haircut. All these were depicted using people he knew. Some live in a home with others and they have staff that are with them at all times. We related this to his knowledge of a group home he was familiar with. We gave the assurance that when an adult moves out of their family home, he or she still see their Mom and Dad, they will come to visit, and the adult will go home to visit also. They still celebrated holidays and birthdays together. Mom and Dad still love their adult son or daughter and that would not change.

Once we found a group home that would be appropriate and we received final approval from the state for his placement, he began to visit there. He already knew some of the people who lived in the group home, which was great! He had many visits which increased his familiarity and gave the staff there some opportunity to see his current staff interact with him. Pictures of the visits were taken, including pictures of visits to the local YMCA where he exercised on the treadmill. Exercising at the Y fitness room is something that he has been doing and so brought in an aspect of familiarity. Using these pictures, we created another story about visiting the group home. This story was reviewed with his counselor over several sessions. Repetition of the information with someone he had developed a trusting relationship with was very supportive to the process.

Once we had a move-in date, we created a story about the move, again with pictures of where he would be living. His room had been set up with a new bed that he tried out in the store before we purchased it. He loves it! He had the things that we know he enjoys and we felt would give him comfort as well as adding some familiarity in this new environment. This story was read with his counselor to help him process the move.

Meanwhile I had developed an extensive list of things to know about my son that would facilitate the transition. There are so many little things that needed to be communicated, things that we knew and that were very important for the staff that would be supporting him to know. I started the list and went back to it many times to add things as I thought of them. It was definitely a work in progress.

As his speech is difficult to understand for people who do not know him and have not spent time with him, I made visual icons of foods he liked and requested. I also created a visual schedule as his routines would be different in this new environment. A visual schedule would allow him to understand what was going to happen and to give some input to activities he would like to do. . I knew it would be important to give him as much information as possible in the format he could best access and understand (visual vs. auditory).Visuals he uses to communicate how he was feeling, if anything was hurting are crucial as we knew he would not verbally be able to accurately share this information

Several meetings were set up to facilitate the transition. My son was already known to other staff in the agency as the group home is run by the agency that had been working with him for many years. They read him well, understand his needs and know how to successfully support him. It was crucial that their knowledge be shared with staff that would be new to my son. There were so many little things that the new staff needed to know as he would not be able to tell them. Although he is somewhat verbal, his ability to communicate verbally for purposes beyond requesting specific things, mostly food, is limited. If he became anxious or had physical discomfort and they did not know how to read the signs and give him the visual supports that had been created to communicate physical pain or did not pick up his need to use sensory strategies to help him feel calmer, he would be left to communicate behaviorally.

All of the planning did indeed support a smooth transition. He has adjusted well, is comfortable and happy in his new home, and he has the support he needs to help him enjoy the good times and to safely navigate the challenging times.

Something hurts!

As a parent of an adult with Autism who has many health issues, I know all too well the behavioral challenges that can arise as a result of being in discomfort due to physical pain. Even when you get to the point of recognizing the behavior is a result of physical pain, it is difficult to figure out what is hurting.  You have to be a very good observer to figure out what is going on physically, as individuals on the Autism Spectrum,  verbal or non-verbal, have difficulty in communicating about their physical discomfort.  When you ask my son verbally, “how are you feeling”, his answer is a standard O.K. Believe me, you know he is not O.K.

I recently watched an interview of Margaret Bauman regarding Medical Cormorbidties in Autism Spectrum Disorder  as part of an Autism Spectrum Disorder: Research and Treatment Implications webinar series conducted by the Cleveland Clinic.

In the course of the interview she discussed the fact that often medical issues are overlooked because the person with Autism Spectrum Disorder often communicates their discomfort with their behavior. The behavior is simply seen as part of their Autism, and so the physical issue is overlooked.

Researchers are coming to understand that individuals with Autism Spectrum Disorder often have various medical conditions that can really impact their life, and as Dr. Bauman has pointed out, affect their behavior.

“Many children and adults diagnosed with an ASD have comorbid health problems. Recent large-scale studies,including a detailed assessment conducted by the US Centers for Disease Control and Prevention (CDC), have confirmed that several medical conditions are significantly over-represented in people with ASD compared to the general population and other developmental conditions prevalence estimates. Individuals with ASD have much higher than expected rates of various medical conditions studied, including:ear and respiratory infections, food allergies, allergicrhinitis, atopic dermatitis, type I diabetes, asthma, gastrointestinal (GI) problems, sleep disorders, schizophrenia, headaches, migraines, seizures and muscular dystrophy (Chen, 2013; Gurney, 2006;Isaksen et al., 2012; Kohane et al., 2012; Mazurek et al., 2012; Schieve et al., 2012).” reference from: Medical Comorbidities in Autism Spectrum Disorders A Primer for Health Care Professionals and Policy Makers,Second Edition: July 2014

Getting back to my son’s pain issues specifically… I took some time to really think through what I should do to support his communication about pain. I reminded myself that verbally asking a person with Autism an open-ended question such as “how do you feel?”  or “what hurts?” , is not the best way to get a answer that will be helpful because they are visual learners. They process information better when they see it, and need to have some visual options to choose from to support their difficulty in communicating about how they feel. Even when they learn to tell you something hurts, they have difficulty with organizing a reliable response.

So, I took the logical next step- create some visual supports! My son now processes my question as to how he is feeling by looking at a feelings chart. I did not use it only when I was he was upset, but at other times when he was calm so he learned what “I’m O.K.” meant. When he points to “I’m O.K” I point to “Something hurts” while saying, “so that means nothing hurts”, to have him confirm his answer. This has helped him to think about and better communicate  how he feels.

feelings chart

In the process of utilizing this visual with my son, I learned that I needed to velcro the symbols onto the background or my son will point to the same spot each time. So I move the symbols so that he really looks and accurately answers. If I did not do this he cannot use the visual to communicate how he is really feeling.  How the visual is arranged and implemented is key to its’ usefulness!

With a good amount of practice and talking about how parts of the body can hurt, he is more accurate in communicating that something hurts.

The next step was to create a visual for him to tell me what hurts and how much- the body part in front and the how much in back.

    circles and body

I found he was not able to use the full body and point to the area that was painful. So back to the drawing board (when a visual is not working, remember to tweek it!)

I created a visual with the various body parts that are  velcroed onto a background so again they can be moved around so he won’t point to the same spot each time. I did not put more than 4 body parts on a side so that there would not be too many symbols for him to look at.  I point to each symbol to help him focus on each one.

What hurts

The visual with the actual body parts has worked very well- he is able to more accurately tell me what is hurting.  It did not happen overnight, but it was worth the work.  Now, people are  able to help him with his discomfort! What a relief for all involved!

I share this story in the hopes that you will plan to create some visuals around medical issues for anyone who has Autism Spectrum Disorder. Since we know that communicating about physical pain due to medical issues is such a challenge for individuals with ASD, this support is crucial to their well-being and can even be a lifesaver. Sadly, Dr. Bauman talked of doing autopsies on individuals with ASD and only then finding the medical cause of death. Not every health issue is a matter of life or death, but each can be very challenging if the individual does not develop a way to communicate about his or her physical pain.

by Linda Armstrong

Dealing With Stress

I recently read an article that appeared in the New York Times entitled When the Caregivers Need Healing. The article notes that while ” all parents endure stress, studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future- all of it can be overwhelming.” The article goes on to discuss a study published in the journal Pediatrics regarding two approaches that were utilized to help parents deal with their stress. “The first group practiced meditation, breathing exercises, and qigong practices to hone mental focus. The second received instructions on curbing negative thoughts, practicing gratitude and reclaiming an aspect of adult life.” Both groups experienced significant reduction in stress, anxiety, depression as well as improved sleep and life satisfaction.

I do not want to imply that being a parent of a son or daughter with Autism does not have many wonderful moments, it certainly does. However there is no doubt that there are stressful times in supporting a son or daughter with communication and sensory processing difficulties and often medical issues. All of these challenges can lead to frustration and feeling overwhelmed not only for them, but also for us as parents, trying to figure out what is going on and how to support them during these stressful times. As I grew older, I recognized that if I was going to be able to continue to support my son with his challenges without it depleting me, I was going to have to really focus on how best to deal with my stress.  By the way, you do not have to wait to be older to find something that can be helpful!

I began a mindfulness meditation practice and have learned to deal with difficult emotions, such as frustration and sadness, in more mindful ways.

“Here are a few key components of practicing mindfulness that Kabat-Zinn and others identify:

  • Pay close attention to your breathing, especially when you’re feeling intense emotions.
  • Notice—really notice—what you’re sensing in a given moment, the sights, sounds, and smells that ordinarily slip by without reaching your conscious awareness.
  • Recognize that your thoughts and emotions are fleeting and do not define you, an insight that can free you from negative thought patterns.
  • Tune into your body’s physical sensations, from the water hitting your skin in the shower to the way your body rests in  your office chair.”

I have found the teachings of Pema Chodron, an ordained nun in the Shambhala Buddhist tradition, to be enormously helpful. She has focused a lot of her teaching on dealing with frustration, sadness, and other difficult feelings. A few of the titles to the many books she has written are, When Things Fall Apart, Heart Advice for Difficult Times and The Places that Scare You, a Guide to Fearlessness in Difficult Times, and Getting Unstuck: Breaking Your Habitual Habits and Encountering Naked Reality. As you may guess, many of our habitual ways of dealing with things that are stressful are not in the long run helpful to us or anyone else. We often bury anxiety and frustration or act out of it with aggression toward ourselves (who has not given themselves a hard time about something they were thinking or feeling) or others (who has not yelled at someone while driving).  Imagine that, we may have habitual ways of reacting that are not helpful, and we don’t have Autism Spectrum Disorder! Thinking about how we may habitually react in ways that are not helpful can make us feel more compassionate toward our sons and daughters when they struggle, and toward all others who are struggling and acting out in their own habitual ways. It takes work to recognize our reactions that are not helpful and then to learn more helpful ways to deal with our stress.

Mindfulness meditation is not the only form of meditation. Indeed, repeating prayers is a form of meditation, although meditation is not tied to religion. Just Google meditation techniques and you will find lots of information about meditation and its’ benefits.

Best Practices for Visual Supports

I have made visual supports for my son who has Autism for 29 years now. Additionally, I make visual systems for individuals with Autism Spectrum Disorder through a Visual Clinic that we offer at Community Autism Resources. Through this clinic and my personal experience I have seen the impact these systems can have. When you realize that most people on the Autism Spectrum are visual learners, meaning that they understand things better when they see them visually than when they are spoken to, it highlights the important role that visual systems play.   Temple Grandin, a woman on the Autism Spectrum explains it well… “I THINK IN PICTURES. Words are like a second language to me.”

When I began making visual supports for my son I had to find images and cut them out and then paste them.  Then Boardmaker, a software program created by Mayer-Johnson came out and you could make the picture symbol border and then with a movement of your hand make multiple borders. Mayer-Johnson has thousands of visual representations that you can choose from and place within your borders in a matter of minutes.  While you can take visual pictures or find real pictures on Google images and other sites on the web, many people would just automatically use the Mayer-Johnson symbols because they came with the program.  The issue is that not every person with Autism Spectrum Disorder understands the symbols as they tend to be abstract. It would be like me using a foreign language that you did not know, to communicate with you. Clearly, you would not find this very useful. The same will be true with a system that we create which has visual representations that are not understood. So we need to assess what the individual understands.  After all, if we put the effort into creating a visual system, we want them to be able to utilize it!

As you can see, making a visual system is much more than creating visual symbols.  There is much thinking and planning that goes into the process, and once you create the system, how the system is introduced and implemented is key to its’ success.  If it is a choice board, does the person you have created it for actually understand how to make a choice? If it is a visual schedule, how many symbols can the person view at once without getting visually over-stimulated and confused?

I think about these things a lot because I am passionate about people with Autism Spectrum Disorder having access to visual supports.  I am very excited to see that Linda Hodgdon, who I refer to as the guru of visual supports, has begun a series of short articles in her newsletter on the topic of “Best Practices for Visual Supports.”  You can find her first article in the series here.