13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

 Often I get emails from parents who  think their child is getting worse when they hit the double digits.  That’s what it seems like when puberty hits!  So I’m reprinting this article I wrote about adolescence that  first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it. I hope you find it useful.

As well to provide an opportunity for parents and educators to have more in-depth information, I’ll be giving a course on Adolescence and Autism here in the  Autism College Classroom on September 10, 17, 24  from 6:00 pm to 8:00 pm PST  (9:00 pm to 11:00 pm EST)   Participation is limited so that participants can have time to ask questions and get advice.  Click here for a description,  Click here forpricing and to enroll. Questions? Email me at Chantal@AutismCollege.com. 

 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

0009Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming. (Read my post about a useful book here).
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designated place such as his bedroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

For more information on Adolescence and Autism, sign up for my on-line course.

Preparing Your Teen or Young Adult for Work in the Real World

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“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.

Rethinking Autism: Implications Of Sensory And Movement Differences

This article  was written by Anne M. Donnellan, University Of San Diego;  David A. Hill, Toronto, Ontario; Martha R. Leary, Halifax, Nova Scocia; and was published in the Disability Studies Quarterly,Vol 30, No 1 (2010)

Abstract

Descriptions of autism in the Diagnostic and Statistical Manuals of the APA and throughout much of the history of autism emphasize difficulties in social interaction, communication and imaginative play. Recent reports by self-advocates, neuroscientists and other researchers suggest that sensory and movement differences may play a significant part in the lives of those who live with autism. Sensory and movement differences may include difficulties in starting, stopping, continuing, combining and switching motor action, speech, thought, memory and emotion. A review of these reports, the experience of those with other movement differences, and implications for understanding individuals with autism are presented. Suggestions are included on how knowledge of sensory and movement differences may offer guidance in rethinking assumptions about autism characteristics, social interactions, communication and other supports. Authorship is considered equal. The authors wish to thank Dr. Gail Evra for her invaluable editorial assistance. I was intensely preoccupied with the movement of the spinning coin or lid and I saw nothing and heard nothing. I did it because it shut out sound that hurt my ears. No sound intruded on my fixation. It was like being deaf. Even a sudden noise didn’t startle me out of my world.

(Grandin, 1992)

People labeled with autism often move their bodies in ways that are unfamiliar to us. Some people rock, repeatedly touch an object, jump and finger posture while other people come to a standstill in a doorway, sit until cued to move, or turn away when someone beckons. As professionals trained to see these as autistic behaviors, most of us have interpreted such movements as both volitional and meaningless; or as communicative acts signaling avoidance of interaction and evidence of diminished cognitive capacity; or as some combination of these, and often have targeted them for reduction. We have taken a socially constructed interpretation of what we see and have built a “theory” of autism.

This paper challenges the traditional definitions of autism that give primacy to a triad of deficits in social interaction, communication and imaginative play (Wing, 1981; Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) (APA, 2000). The approach is both widely known and essentially unchallenged despite broad acknowledgement that autism is a condition that reflects some differences in a person’s neurology. Typically, the neurological implications have not become part of the description. Over the past two decades, however, researchers and self-advocates have begun to rethink this socially defined focus. They express concern that children and adults with the autism label may be challenged by unrecognized and significant sensory and movement differences (e.g. Hill & Leary 1993; Williams, 1993; Bristol, Cohen, Costello, Denckla, Eckberg, Kallen, Kraemer, Lord, Maurer, McIlvane, Minshew, Sigman, & Spence, 1996; Donnellan & Leary, 1995; Leary & Hill, 1996; Filipek et al., 2000; Donnellan, 2001; Sullivan, 2002; Dhossche, 2004; Bluestone, 2005; Nayate, Bradshaw & Rinehart, 2005; Endow, 2006; Jansiewicz, Goldberg, Newschaffer, Denkla, Landa & Mostofsky, 2006; Mostofsky et al., 2006; Leekam, Nieto, Libby, Wing & Gould, 2007; Markram, Rinaldi & Markram, 2007; Tomchek & Dunn, 2007; Gernsbacher, Sauer, Geye,Schweigert, & Hill Goldsmith, 2008; Green, Charman, Pickles, Chandler, Loucas, Simonoff, & Baird, 2009; Goldman, Wang, Salgado, Greene, Kim & Rapin, 2009; and Mostofsky, Powell, Simmonds, Goldberg, Caffo, & Pekar, 2009).

Researchers and others describe these differences using a variety of terms, such as motor problems, sensory-integration problems, inertia, sensory overload, apraxia, dyspraxia, echolalia, mutism, behavior disorder, catatonia, or clumsiness. To reflect the range and complexity of sensory perception and movement related phenomena, we use the term “sensory and movement differences” as it encompasses the dynamic interaction of sensation and movement (Gibson, 1979; Thelen & Smith, 1995) while acknowledging that many differences are merely part of the richness of human diversity.

Behavior is highly interpretable. Some behaviors may be communicative; some may be volitional. Some behaviors, however, may not be intentional. Rather, observed behaviors may be artifacts of the difficulties a person may be having in organizing and regulating sensation and movement. Still others may be subtle signals of the desire for relationship or expressions of meaning. Therapeutic and intervention-based approaches, designed to address perceived and identified challenging and problematic behaviors of individuals with autism, tend to oversimplify the complex nature of human interactions in an attempt to delineate and manipulate variables contributing to and sustaining particular behaviors.

As we have professionalized interactions with people with autism, we have trained professionals, parents and others to interpret what happens in terms of simple, binary views of behavior (i.e. good/bad or positive/negative), and to see behavior as controlled by immediate, situational antecedents and consequences. When we focus on these socially constructed expectations for behavior and communication in our fast-paced, super technological world, we miss opportunities to know and understand people who may experience their existence and interactions in very different ways. Behaviors may not be what they seem to be (Donnellan, Leary & Robledo, 2006).

Our interest in the topic of sensory and movement differences has grown from reports by many self-advocates with the autism label and their caregivers that disturbances of sensation and movement are a constant concern, frequently constraining the ability to communicate, relate to others and participate in life (e.g., Strandt-Conroy, 1999; Barron & Barron, 1992; Rubin, Biklen, Kasa-Hendrickson; Kluth, Cardinal, & Broderick, 2001). Organizing and regulating sensory information and movement in order to participate in social relationships may be frustrating for people with such differences. These differences can involve difficulties initiating and executing movements or difficulties with stopping, combining, and switching sensation and movement, including speech, thought and emotion (Hill & Leary, 1993; Donnellan & Leary, 1995; Donnellan, Leary & Robledo, 2006), making social relationships and many other activities very challenging and even overwhelming.

Self-advocates also report that they lack sensation or feedback from their bodies and may feel physically unaware of their facial expressions, position in space and movements (e.g., Blackman, 1999; Hale & Hale, 1999; Williams, 1996a, 1996b, 2003). Some experience the sights and sounds of their world as being painfully intense (Condon, 1985; Williams, 1992 & 1996b; Markram, Rinaldi & Markram, 2007). Extreme emotions can cause the individual to become stuck, unable to initiate or cease repetition of a movement. Self confidence and reputation often suffer when others assume a person is repeating an action “on purpose.” Sean Barron wrote, “All I wanted was to be like the other kids my age. It felt as if I was weird and strange on the outside, but inside I wasn’t like that. The inside person wanted to get out and break free of all the behaviors that I was a slave to and couldn’t stop” (Barron & Barron, 1992, p. 181). For many people, as for Sean, simple movements can lead to repetitions or perseveration, even when they want to stop the movement.

Our concern here is not to discard useful information already accumulated via a primarily socially defined approach to autism. Nor are we interested in enhancing a deficit-based approach to understanding autism, or in creating a new disability category. We do not propose to specify a cause of autism or a site of lesion or dysfunction within the central nervous system. Rather, we write to share our emerging awareness that people may struggle with difficulties that are not immediately evident to an outsider. That is, our experience of individuals with autism ought no longer to be assumed the same as their experience. Individuals with the autism label often describe experiences which are not immediately obvious to the rest of us but which may well affect our understanding of their behavior. These experiences frequently fit the definition of sensory and movement differences. Sue Rubin (August 4, 2007 personal communication) described her dilemma with intention and action: “When you said we could stay and asked dad to do the shopping for the Asperger’s barbeque, my body relaxed and autism let me eat the melon.” And two other autistic adults had the following interaction about sensory and movement differences. Judy Endow (personal communication on Facebook, January 25, 2009) described her experiences in relation to sensory and movement differences as follows:

I think the fluidity of access to various places in my brain is dependent upon neurological movement between places. I’m no scientist, but have always been able to “see” this inside of me. Sometimes my speaking is hindered, other times my thinking, and sometimes my physical movement. The hardest is when thinking is not working smoothly. When that happens, I have to line up one thought at a time, like train cars. I like it much better when my thoughts do not have to be methodically lined up, but are more fluid with colors coming in and out and swirling into unique and beautiful patterns. (My thoughts are in pictures and sometimes moving colors).

Phil Schwarz (personal communication on Facebook, January 25, 2009) commented on Judy’s description by using another analogy:

I think that processing bandwidth — what Judy calls “neurological movement between places” — is a critical factor in autism. I think that those of us who learn to cope develop adaptations that allow more parsimonious use of the bandwidth available to us: love of sameness, or of patterns, or of predictability (so that we can apply the bandwidth we do have to *deviations* from the predicted or from the patterns). There is a coherent autistic aesthetic sensibility, that is informed by this search for parsimony of bandwidth use, and for titration of excesses.

This paper explores some of the implications of sensory and movement differences in the development and experiences of individuals with the autism label. We note, of course, that some researchers and clinicians completely deny the possibility that individuals with autism might experience any problems with movement. Rimland (1993), a psychologist long a proponent of a biological approach to autism, wrote the following:

It has been widely recognized for many decades that the vast majority of autistic persons are quite unimpaired with regard to their finger dexterity and gross motor capabilities. They have in fact often been described as especially dexterous and coordinated. The literature abounds with stories of young autistic children who can take apart and reassemble small mechanical devices, build towers of blocks and dominos higher than a normal adult can, assemble jigsaw puzzles and climb to dangerously high places without falling. The files of the Autism Research Institute contain over 17,000 questionnaires completed by the parents of autistic children. Finger dexterity is one question we’ve asked about since 1965. Most parents indicate that their children are average or above in the use of their hands. The idea that autism is, or typically involves, a “movement disorder” is simply ludicrous. (p. 3)

Likewise, Mulick, Jacobson & Kobe (1993), behavioral psychologists, stated unequivocally that clinical experience argues against any motor/movement difficulties, particularly voluntary control of movement as in apraxia:

Scientific evidence for developmental apraxia in autism is lacking. Autistic youngsters are often characterized by better-developed motor skills than verbal skills, even real non-verbal problem solving talent… There is no research evidence at all to support the position that people with autism experience such global problems. The usual clinical finding, familiar to any psychologist who routinely works in this area, is that motor impairment and delay is much less common than communication disorder and delay (Jacobson & Ackerman, 1990, p.274). (Italics in original)

This common approach to autism pays scant attention to possible somatic difficulties resulting from neurological differences. Perhaps, this is a function of the dominance of psychology and psychiatry for the first 50 or more years of the autism story. Yet some psychologists and psychiatrists did report movement differences and even catatonic symptoms in autism long before Rimland or Mulick et al. and others denied the existence of such evidence (e.g. Damasio & Maurer, 1978; Wing & Attwood, 1987). More recently, many researchers have noted the presence of impairments in basic motor skills: gait, posture, balance, speed, coordination (e.g., Ghaziuddin & Butler, 1998; Jansiewicz et al., 2006; Noterdaeme et al., 2002; Rinehart et al., 2006).

Many neuroscientists now are stressing the significance and implications of motor and sensory difficulties in the development of children with autism. For example, Sutera, et al. (2007) looked at four year-olds who had been diagnosed at age two and received early intervention of various amounts and types. Of particular interest were the children who “lost” the diagnosis of autism by age four. Sutera, et al. found that the best predictor of this outcome for very young children with autism is motor skill at age two. Mostofsky (2008) noted this finding and addressed concerns about the exclusion of motor problems from the “core” features of autism in the Diagnostic and Statistical Manual, (APA, 2000) “…despite [an] abundance of literature suggesting otherwise.”

A growing number of researchers and clinicians in a broad range of disciplines continue to stress the importance of studying motor function in autism because, as Rogers and Benetto (2002) reported “….studies show that movement abnormalities are present early in children with autism, and may precede the emergence of the syndrome.” Mostofsky noted: “Motor signs can serve as markers for deficits in parallel brain systems important for control of socialization and communication.” For example, children with autism are often described as lacking reciprocity. Esther Thelen (1941-2004), an innovative researcher of infant development, upon reviewing the issue of motor development in autism asked: “How can you talk about “reciprocity” or lack thereof as a psychological phenomenon if the child has motor problems?” (1997 Personal Communication)

In the course of development, if individuals move and respond in idiosyncratic ways from infancy, they will experience all interactions within a unique frame that most certainly differs from that which is called typical. The cumulative effect of such interactions will be one in which all aspects of relationships, including how to establish and maintain them, may be markedly skewed from the broader cultural consensus and expected rules of how relationships work. (See Stern, 2005; Gibson, 1979; Thelen & Smith, 1995 for reviews of the complex and dynamic interrelationship of movement, perception, relationship and cognitive development.) Our experience and self-advocate reports have taught us that individuals with autism often are aware of their idiosyncrasies, may not be able to control them but do want communication, participation and relationship. In order to make this possible, we need to acknowledge and accommodate the differences so that communication, relationship and participation can happen.

Dynamic Interactions Of Nervous System, Body And Environment

As we have noted elsewhere (Donnellan, Leary & Robledo, 2006), the writings of many authors interested in movement describe a unity of perception, action, emotion, and thought. Moshe Feldenkrais (1904-1984), a physicist, martial artist, and renowned movement practitioner noted: “Our self-image consists of four components that are involved in every action: movement, sensation, feeling and thought” (Feldenkrais, 1972, p. 10). His method is two-fold and may involve independent “awareness through movement” exercises and more hands-on “functional integration” guided movement exercises with the physical assistance of a trained practitioner.

Likewise, in his fascinating book, Awakenings, Sacks (1990) wrote of the self-reports of his patients with post-encephalitic Parkinson’s disease who temporarily “awoke” through the use of the drug L-Dopa. They all had been sick from the same disease, encephalitis lethargica. The area of damage in the brains caused by the disease was clearly established. Nonetheless, each developed his or her own personalized version of movement disorder, and many of their difficulties were unknown to the medical staff until the patients became able to speak. The variety of manifestations of symptoms encompassed difficulties with many hidden aspects of human experience: perception of the passing of time; interest in normal activities; fatigue; memory; and recurring thoughts.

Thelen incorporated dynamic systems models in her innovative research on movement in child development (Thelen & Smith 1994; Thelen, 1995). In this view, perceptions, movement, thoughts, and emotions can be linked together by having coincidentally (and possibly routinely) co-occurred. Experience may selectively reinforce them as a bundle. They can be unbundled or softly assembled as required by the context. The individual is always operating within an environment or context and, as the context changes, systems scan, adjust, and shift as necessary to meet new demands. These contextual shifts play a vital role in movement. Context comes together in such a way as to allow the movement to emerge or not; a movement and, indeed, the person or persons are part of the context (Thelen & Smith, 1994). As Bateson (1972) told us years ago, context is far more than what is left when we take out the part we wish to study.

No single component is causal in determining the movement. As these are dynamic systems, the components are the context that determine the product. Thelen & Smith (1994) further explained that “…even behaviors that look wired in or program-driven can be seen as dynamically emergent: behavior is assembled by the nature of the task, and opportunistically recruits the necessary and available organic components (which themselves have dynamic histories) and environmental support” (p. 73). These may be actions, thoughts, words, memories or sense experiences. Recall Proust, where the smell of a cookie released the hundreds of pages of Remembrances of Things Past.

Thelan’s approach offers new ways to understand the inconsistent abilities and disabilities of individuals with the autism label. Speech is an example of dynamic behavior. Speech is not lost or gained; it emerges when all necessary components recruited, and appropriately regulated and organized, allow its production. Stress often makes speech difficult or even impossible. And stress need not be negative; excitement may also cause difficulties. Paradoxically, for some people with sensory and movement differences, stress also may help produce speech. While presenting with the authors at an Autism Society of America conference in July 1996, Arthur Shawlow, Nobel laureate in physics and father of an adult son with autism, reported that his son could say a complete, and original, context-appropriate sentence about once every eight to ten years. He asked the audience how many parents had similar experiences and at least 18 sets of parents raised their hands. They met and compared notes. Most of the labeled children of these individuals were able to speak under extreme, often negative, circumstances. Some had only spoken once or twice in a lifetime.

Reports of this kind are not unusual in the sensory and movement differences literature, among the autism community, or in our own 100+ years of combined experience with children and adults with the autism label. More common are phenomena such as echolalia, mutism, speech uttered only under unique circumstances, e.g. speaking what they have written. In the dynamic system model, the notion of emergence begins to give us a way to understand and perhaps support people with these differences. Strandt-Conroy (1999) compiled 40 hours of interviews with adults with autism who experienced such symptoms and more. Her interviews had to be adjusted to the specialized needs of the interviewees. Several could only answer written questions sent in advance; others if they were on the phone and in a warm bath. Likewise, the autistic people in Robledo & Donnellan (2007) each had personalized supports to enable them to participate in the interviews. We refer to these specialized arrangements as accommodations after Luria (1932) and Sacks (1990). We define accommodations as adjustments or adaptations of an interaction, a task, situation, or the environment that assist a person to temporarily get around difficulties organizing and regulating sensory information or movement (see Donnellan, Leary & Robledo, 2006 for examples).

Learning From Neurological Symptoms In Other Sensory And Movement Disorders

In our review of the history of movement differences, we found early descriptions of catatonia in the work of Kahlbaum, (1874/1973) which seemed startlingly familiar (see Hill & Leary, 1993; Donnellan & Leary,1995; Starkstein, Goldar & Hodgkiss,1995; Leary & Hill, 1996). In the nineteenth century there was no clear distinction between neurological and psychiatric symptoms. As the two fields diverged in the early twentieth century, however, some conditions gravitated into one or the other. Catatonia is presently defined as a characteristic of certain kinds of schizophrenia, though many have argued over the years for a more neurological view of the disorder (Rogers, 1992; Abrams & Taylor, 1976). The discussion of where to place catatonia and catatonic symptoms is once again topical because of the plan to update the Diagnostic and Statistical Manual of the APA, Some, in fact, are arguing for the inclusion of catatonia as a separate diagnostic category or under “movement disturbances” (Taylor & Fink, 2003; Fink & Taylor, 2006; Penland, Weder & Tampi, 2006; Caroff & Ungvari, 2007;). Irrespective of that discussion, it is useful to look at the symptoms described by Kahlbaum and other early and recent authors as these may illuminate the symptoms seen in individuals with autism and other developmental disabilities.

In Table 1, the characteristic features and symptoms on the left side of the table are borrowed from descriptors specific to several kinds of movement disorders, (Kalbaum, 1874; Fink & Taylor, 2006; Caroff and Ungvari, 2007;http://www.movementdisorders.org/disorders, 2009). The list of movement disorders symptoms is not in any particular order or hierarchy; rather, symptoms are listed randomly as taken from the above literature sources. The intent here is to show the scope of symptoms by feature that may account for certain behaviors seen in autism. Examples of behaviors listed on the right side of Table 1 appear there because they have been discussed in a previously published review of the autism literature and movement disturbances (Leary & Hill 1996). The majority of these have also been documented and observed throughout many years of clinical practice with a large number of individuals with autism across the life span.

Table 1. Characteristic Features of Substantiated Movement Disturbances and Evidence of Possible Overlap of Symptoms in Autism
Movement Disturbance Feature Symptom Evidence In Autism
Repetitive motor actions e.g., Tapping, touching, grimacing
Rhythmical, cyclical movements e.g., Rocking, shrugging, squinting, pouting
Lack of Initiation Requires prompts and cues to perform
Difficulty imitating other’s actions Both immediate and delayed motor imitation difficulties
Echophenomena Mimesis; elaborate copying of others actions — verbal and/or motor
Immobility Remains fixed and inert in position and posture for extended time periods
Withdrawal Isolates self away from focal activity and others
Grimacing Facial/oral-motor movements
Stereotypies Repetitive movements of the hands, limbs extremities and whole body
Aversion Of eye gaze and attention to other
Negativism Oppositional actions elicited with passive movement and overall behavior
Automatic obedience; Suggestibility Extreme compliance in response to verbal suggestion and environmental cues
Rigidity Muscles rigid to passive movement
Bradykinesia Slowness of movements, feebleness
Tremor Essential, intentional, rest, postural etc.
Forced grasping Of another’s hands, wrists, etc., or items in the environment
Akinesia Marked absence of action and movements
Akathisia Motor restlessness, moves about but not goal-directed
Ataxia Loss of coordination in motor action execution
Perseveration Motor or other repeated behavior after being elicited an initial stimulus
Ambitendency Appears “stuck” in indecisive, hesitant movements
Tics Motor and/or verbal
Obstruction; Blocking Incomplete movement towards a goal — “gets stuck” en route to goal
Difficulty with stopping, cessation of movement Will continue movements unless redirected or stopped by an external means
Mannerisms Uses intact and entire motor action sequences out of context e.g., salutes
Waxy flexibility Automatic ease and compliance with assuming unusual postures for extended time
Ballismus Violent, rapid and apparently involuntary actions and movements
Choreiform movements Rapid and apparently involuntary travelling and “dancing” ripples of movement
Catalepsy (posturing) Maintains seemingly uncomfortable and imposed postures for extended time
Athetoid movements Slow, writhing movements and actions
Spasms Muscular spasms of varying durations affecting muscle groups
Dystonias Sustained torsion due to muscle contractions in varied muscle groups
Impulsivity Actions and movements triggered suddenly
Self-injury, mutilation Disturbing and persistent attempts to inflict pain on self
Excitement; Frenzy Marked episodes of extreme amounts of activity for extended time
Aggression, Destruction Unprecipitated violent actions directed to others and the environment
Stupor Prolonged period of total immobility, lack of responsiveness and mutism
Rituals Object-related actions on objects as part of a routine, repeated event
Motility changes e.g. Toe walking, skipping, hopping
Changes in speech behavior e.g., Mutism; question repetition,; echolalia; verbigeration; logorrhoea; foreign accent; changes in prosody; difficulty modulating volume
Autonomic changes Changes in typical autonomic functions e.g., heart rate, perspiration, breathing, core body temperature

Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinson’s disorder and catatonia, there was a neurological interpretation of symptoms. A social rather than a neurological interpretation was applied if the person had a label of autism. That which is called a “tic” in a person with Tourette syndrome is most often assumed to be a ‘behavior’ (and often a conscious choice) in a person with autism. For symptoms interpreted through a neurological lens, individuals tend to be appropriately supported. In autism, symptoms are viewed frequently as behaviors to be reduced or eliminated, often with a negative intervention and results. Table 2 illustrates descriptions given to similar behaviors dependent on a person’s diagnosis.

Table 2. Differences in descriptions of behavior
Neurological terms Social Interpretation of behavior
Akinesia Non-compliance, social indifference
Festination Behavior excess, careless
Bradykinesia Lazy, slow
Bradyphrenia Mental retardation
Tics Aberrant behavior
Obsessions/ Adventitious behaviors Autistic behavior, ‘stims’

The sensory and movement differences reported by and observed in individuals with autism may have a significant impact on their and our ability to relate and participate in social interactions. A neurological view of symptoms possibly affecting autistic individuals will help us to understand further the nature of differences experienced by these individuals. While the psychological impact is very real as experienced first-hand by participants in such interactions, it is useful to suspend social interpretations of the symptoms so as not to mistakenly ascribe intent and volition to individuals whose behavior may be contrary to what really is intended and able to be communicated.

Detailed personal descriptions of movement and sensory differences found in other disabilities have given us some additional insight as to what it may be like for a person to deal with various symptoms, such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world (e.g. McGoon, 1994). Frequently, the person has both the challenge of the movement difference and burden of blame and misunderstanding. In Strandt-Conroy’s (1999) research, it was often necessary to use vignettes from people with other sensory and movement differences to enable the autistic interviewees to recognize their own experience. Most expressed gratitude for the opportunity to learn about movement differences as they often had blamed themselves for their behavior and thought they were alone in having these difficulties.

Implications Of Sensory And Movement Differences For Understanding People Labeled With Autism

A Different Kind Of Science

Woe to that science whose methods are developed in advance of its problems, so that the experimenter can see only those phases of a problem for which a method is already at hand.

(Murphy,1939, p. 114).

We have stressed the neurological aspects of what are commonly thought of as autistic characteristics and behavior problems. We do not intend, however, to either suggest a whole new category of disabilities in autism nor to eliminate the psychological aspects. The issues here are similar to the challenges faced by those interested in Tourette syndrome. The syndrome was elucidated before the fields of neurology and psychiatry diverged (Gilles de la Tourette, 1885). For many years, psychiatry dominated the discussion and the treatment. In the past few decades, there has been a far greater emphasis on the neurology of the disorder. Yet, it is clear that it is not possible to separate the neurological from the psychological in a living human being. As Sacks suggests (1989) there is need for a different kind of science that views the individual as a whole person, mind and body. This shift has begun in Tourette syndrome. In addition, dynamic systems models of development suggest an emphasis on the unique history and the critical importance of context on the manifestations of the symptoms. Perhaps the present emphasis on discrete “autistic” behaviors tied to specific interventions should be seen in terms of more conscribed value and utility.

Developmental Versus Acquired Symptoms

In addition to the personalized nature of the characteristics and the dynamic nature of the manifestations of a movement difference mentioned above, it is impossible to overemphasize the importance of the developmental aspects of movement differences in autism vs. adult acquired disorders. For example, bradykinesia, or very slow movements, might have a wide range of effects on adults with acquired disorders such as Parkinsonism. In an infant or a toddler, the possible effects of slow responding or delayed initiating would surely have an effect on the entire trajectory of development even if the difference were intermittent or barely perceptible to the parents or professionals. Of course, we are not suggesting that these autistic people have Parkinson’s syndrome; rather, that they report sensory and movement differences which are not obvious to their caregivers, particularly parents of young children. Yet, the potential changes to the “dance of relationships” (Stern, 2000) alone would be worthy of many dissertations in child development. Still, the complexity of the task ought not deter us from attempting such inquiry because it could have enormous implications for our understanding of human development and diversity.

Interpretation Of Symptoms As Volitional

Many of us have accepted without question the implicit message that unusual movements presented by people with autism are always volitional and often pleasurable. Symptoms of sensory and movement difference in autism are consistently interpreted by others as autistic behaviors. Neurological symptoms, such as sudden, loud vocalizations; being in constant motion; extreme response to minor changes; unusual mannerisms and gait; and “unmotivated” laughter are examples of behaviors commonly thought to be performed “on purpose” and targeted for behavioral intervention. A social interpretation of these symptoms leaves people with the assumption that they occur as a matter of choice, apathy, or learned behavior. Aggression during an episode of catatonic frenzy is viewed differently if the neurological aspects of the person’s experience are considered. Typically, reprimands or contingent praise would not be used to change a recognized neurological symptom. As noted, the non-volitional aspects of behavior are rarely considered for people with autism. For example, the authors have all too often heard criticism and disparaging descriptions such as lazy or non-compliant applied to a person with autism who is in a non-responsive state. Frequently, the difficulty is related to stress, even the stress of excitement. An all too typical example is staff or family reporting that the child or adult refused to get out of the car or van to go to a place he or she seems to like. Intervention or support that is based on our social interpretations of symptoms may not always be helpful. Returning thenon-compliant person to home, school or program usually results in additional trouble. We need a clearer understanding of people’s experiences if we are to provide appropriate care and support that boosts self-confidence and is the product of collaboration rather than control. Donnellan, Leary & Robledo, (2006) offer many suggestions for accommodations that may help people with autism deal with these situations.

Interpretation Of Symptoms As Meaningless

Our assumptions about a person’s intention or meaning directly influence the way we respond moment to moment, the relationships we form, and the support we give to people. When we label aspects of a person’s behavior as meaningless, we may miss opportunities to extend learning and develop our relationships. Echolalia serves well as an illustration. In the early years of behavioral intervention for people with autism from 1960 to 1980, professionals assessing a child’s communication abilities were to assume that echolalia was the “meaningless repetition of a word or word group just spoken by another person” (Fay, 1969, p. 39), a non-functional, undesirable and “sick” behavior of autism (Lovaas, 1966; Lovaas, Schreibman & Koegel, 1974), and a communication disorder to be extinguished through behavior modification (Lovaas, 1977). In the 1980s, the fine and detailed work of researchers such as Baltaxe & Simmons (1977), Prizant & Duchan (1981) and Prizant & Rydell (1984) began to influence our assumptions about the intentions of autistic speakers and the possible communicative functions of both immediate and delayed echolalia. Many people now understand that echolalia is neither always meaningless nor always meaningful; rather it serves a variety of pragmatic functions on a sociolinguistic continuum. Although sometimes not intentional, echolalia may be used intentionally by many who lack other strategies for communicating to maintain relationships, improve their comprehension of spoken language and to express meaning (Kanner, 1946). Acknowledgement of a person’s efforts to accommodate, improvise and create meaning is a cause for celebration and an opportunity to improve communication and boost self esteem.

Interpretation Of Symptoms As “Not Interested” In Relating Or Communicating

People with autism often communicate, behave and participate in unique, very personal, perhaps idiosyncratic ways that require their partners to be more flexible and open than usual in interpreting meaning and intention. Differences in the way people are able to use their bodies and focus their attention leads many to assume that a person does not care to participate or communicate and does not desire relationship. These assumptions affect our expectations, the way we speak with them and the educational and social opportunities we offer to them. Under the “criterion of the least dangerous assumption” (Donnellan, 1984), it is safest to assume that relationships are critical to human beings for learning and development even if, and perhaps especially if, they have difficulties in these areas (Robledo, 2006; Fogel, 1993).

The Critical Importance Of Relationship In Learning And Development

The past 40 years have witnessed the growth of a body of knowledge, approaches and intervention methodologies designed to address the needs of individuals with autism. Often the kinds of intervention strategies at our disposal are based on ideas and theories that conflict with each other. The content of interventions may be highly prescriptive or more loosely defined. Research can be cited in support of the efficacy of almost any kind of approach for at least some individuals in some situations. We struggle as well to explain and describe that quality within any intervention that works and leads to growth and development between the partners involved. Perhaps the essential factor underlying any successful intervention has been overlooked or at least not credited in the research. We propose, along with a growing number of investigators, that the undefined element is the presence and nature of the relationship between persons in any interaction.

The role of relationship in learning is the centerpiece of sociocultural psychology. Sociocultural psychology views human development as essentially embedded and significantly dependent on interactions with more able and skilled members of the existing cultural and social context. While most of us believe that learning is enhanced by a facilitative relationship with a more mature thinker, western psychology has only recently directed attention to the nature of that relationship. Lev Vygotsky (1896 1934) was a Russian psychologist whose work described and defined the role of relationship in human development. His work emphasized the notion that cognitive and specific skill development is the result of internalizinginteractions with others within a relationship (Bodrova & Leong, 1996). Ylvisker and Feeney (1998) have translated Vygotskian theory into a support model that focuses on apprenticeship and collaboration between the person and another with more expertise in the areas where support is needed. The “tutor” provides collaborative mediation that is fine-tuned to the learner’s changing needs for support to enable participation in meaningful, project-oriented work. “The roots of cognitive, executive and communication functions, as well as behavioral self-regulation, are everyday social interaction routines” (Ylvisker & Feeney,1998, pp. 15-16). In the sociocultural models of development, relationship with others serves as the springboard for learning. Learning happens within a social context, within a dialogue with others. We acquire cognitive skills, knowledge and behavior regulation, not simply through memorization of facts or actions, but through our interactions in the social world where this knowledge has function and meaning.

Inconsistency In Abilities

People report sensory and movement inconsistencies, such as fluctuations in speed and clarity of sensory perception; unreliable ability to maintain or release body postures; delays in speed and accuracy of movement and speech; unpredictable changes in muscle tone; unwanted vocal, verbal and physical tics and extraneous, non-functional movement (e.g. Mirenda & Donnellan, 1986; Williams, 1996a; Strandt-Conroy, 1999; Harp, 2008). A sensory and movement difference is characterized by this inconsistency, causing stress for the most common of movements (Baggs, 2007). A person struggling with these performance characteristics may not be able to predict, plan for, or sustain effective participation. For example, a person with a 14 second delay in her ability to respond to others (Mirenda & Donnellan, 1986) is likely to be misinterpreted and misunderstood and unlikely to be offered time to respond. This is illustrated by Harp (2008) on her blog, Asperger’s Square 8 (used with permission).

 

Supporting Self Esteem

Humans carry inside themselves an image that includes reasons for, and the possibility of, change. We need to know that we are OK just as we are, even though there are things we may want to learn, or to do, better.

A current trend in early intervention for young children with autism is to provide guidance in massive quantities (e.g. 40 hours a week of one-to on-instruction). This guidance is naturally accompanied by frequent corrections and redirection. Given the intensity of this intervention, special care is needed to promote children’s self-esteem at any age.

Equally important is the need for positive, optimistic, respectful support for adults with autism. The paucity of quality programs, diminished opportunity for interesting lives, effects of medication and chemical restraint are just a few of the additional burdens on these individuals and their families. Issues of collaboration, personalization and comfort are also essential for children and particularly pressing for the adult population with the autism label. McGinnity & Negri (1995) offer helpful suggestions on how students and staff can learn to be more sensitive to the differences in those on the autism spectrum.

Collaboration, Personalization And Comfort

The growth of the autism industry over the past two decades has spawned no end of books, interventions, programs and products. Yet, the diagnosis of autism is not prescriptive of the type of supports needed for assisting any particular person to participate, relate and communicate. Supports for people with autism should be personalized, reflect the respect and dignity due to all people, and address the challenges with which people struggle to organize and regulate themselves in response to the sensory environment and their movement differences. Appropriate supports require a deep and local knowledge of the individual. This can be gained from those who know and appreciate them but often such information is not available. Then it is even more essential to spend significant time with the person in a variety of activities and settings and with people who respect and admire him or her. We need to learn to listen with all of our senses and compassion (Savarese, 2007; Lovett, 1996) and to “presume competence” in all interactions. We do not put people in jeopardy by overestimating their experience. We do look for competence instead of deficits and talk to people in age appropriate ways. And we model such interactions for all those who are, or may become, willing to know them better.

Moreover, we need to remember that in our journey of change, we all need allies who will collaborate with us to find the most comfortable and effective ways for us to learn to participate in our families, with our friends and as contributing members of our communities (Schwarz, 2004; Robledo & Donnellan, 2008; Hill & Leary, in press). This is particularly critical for those persons who are challenged by the movement differences that often make such comfort temporary, personhood elusive, and collaboration a mystery. There is much to be learned from self-advocates with autism as well as from individuals who share some of the symptoms of movement differences such as Tourette syndrome, Parkinson’s disorder and their supporters (e.g. Williams, 1992; McGoon, 1994). For example, individuals with Tourette syndrome have taught us that naming a behavior might make it much more difficult for a person to inhibit that behavior. It is roughly analogous to telling a stutterer not to stutter. Anyone familiar with classrooms and programs in autism will recognize the value of that cautionary comment.

Conclusion

When I was growing up, speaking was so frustrating. I could see the words in my brain but when I realized that making my mouth move would get those letters to come alive, they died as soon as they were born. What made me feel angry was to know that I knew exactly what I was to say and my brain was retreating in defeat …

(Burke, 2005, pp. 250-251).

Jamie Burke is a college student who now is able to speak the words he types with two fingers on his Augmentative and Alternative Communication (AAC) device. He requires no physical support for his typing yet continues to need the presence of a trusted support person as an “emotional platform” (Maurer, 1993) to execute his typing. It may be that the relationship allows him to be in a more optimal “space” to regulate the sensory and movement aspects of typing. We have proposed that many other individuals with the autism label may be challenged by sensory and movement differences in starting, stopping, executing, combining and/or switching actions, thoughts, emotions and speech. These symptoms have been described in the literature for many years but generally not integrated into our descriptions or understanding of autistic behaviors.

Sensory and movement differences often escape the notice of those of us who do not typically experience them but have been well described by autistic self-advocates and persons interested in individuals with autism and other disability labels. Ignoring these differences (or redefining them as autistic behaviors to be controlled) has made life unnecessarily more difficult for individuals with autism and those who care about and for them. Many of the assumptive errors we have made are based on our own social history. In the absence of clarity about the nature of these movement differences, we will continue to be forced into the default position of seeing all unfamiliar behaviors as intentional, deliberate evidence of intellectual impairments and even pleasurable. We have not proposed another list of deficits but a greater understanding of the complexity of what we call autistic behaviors and the necessity to rethink our assumptions about them. The task is not going to be easy. Such sensory and movement differences are manifest in autism and many other disorders in strikingly unique, personalized and dynamic ways that test present research (and teaching) strategies that rely heavily on a positivist-reductionist philosophy. Yet, some of the brightest scientific lights of the 20th century reminded us that the best way to approach objectivity in science is to view the phenomenon from as many perspectives as possible (Luria, 1939; Edelman, 1992; Shawlow, 1996, Personal Communication). As Einstein shared, “Not everything that counts can be counted and not everything that’s counted, counts” (Cunningham & Scott, 2004).

There is a long, continual path of misunderstanding to autism. People have been thought of, and referred to, as “non-persons,” “behavior problems” and sub-normal in every imaginable way. If they cannot speak, we assume they have little to say and offer only the most limited of communication options. Irrespective of the precision and intensity of our interventions, more often than not they experience isolation, segregation, homogeneous grouping, loneliness, pain and boredom as part of their customary care across the life span. Often their sensory and movement differences contribute to such outcomes as these leave the rest of us unaware of the true nature of their challenges.

Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized and successful ways. It is the least dangerous assumption (Donnellan, 1984) to see all as full human beings who may have formidable and unfamiliar challenges to overcome and who, of course, desire social interaction, communication and participation.

Too often autistic children are raised to believe they are broken and need to be fixed. Adults with autism too often live lives of isolation and poverty. Understanding people’s experiences may lead to acceptance, accommodation and appropriate support. To continue down the same paths, well worn for 65 years, when all these data impel us to rethink our assumptions and broaden our path is unthinkable.

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Autism Life Skills: 10 Essential Abilities for Children with ASD

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

One Small Step Towards Self-Regulation

How to teach your teen with autism to request a break

Self –regulation is a needed life skill  not practiced  by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card.

Let’s  say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back.  What you need to do is teach him to communicate to you when he needs a break,  and allow him  to have  those needed breaks within reason.   Here is one way to do that: Continue reading »