For the last several weeks, we have been looking at the diagnosis of autism spectrum disorders (ASD), along with the meaning of the term “recovery,” the variety of ways in which people view their own diagnosis, whether to pursue the diagnosis when the characteristics are present, and how and when to disclose the diagnosis.
Now for another question…Is ASD a “disability?” Are those with ASD “handicapped?”
More than likely, people have perceptions of these terms that are as varied and volatile as the feelings surrounding words such as “cure” and “recovery.” To adequately address this question, we need to first look at the abilities of people with ASD. I’ve heard the term, “differently-abled” to indicate those whose bodies or brains function differently than the majority. Certainly, those with ASD are in fact differently-abled. Their abilities often inspire awe and admiration in those who interact with them, from their often excellent memory for facts and statistics, to their ability to view life from a unique perspective, to their tendency to take people at face value, without judging them or forming prejudices.
But do their differences constitute a disability or handicap? Certainly, a practical and legal argument can be presented to enable many with ASD to receive funding or services designated for those with disabilities. In this sense, ASD technically constitutes a disability, especially when an individual fits the dictionary definition of having a condition that “prevents normal achievement in a particular area.” Many people have benefitted from such services, and in fact, could not function successfully without them. Others function at a level where such services are not necessary (or are no longer needed). Perhaps they would even fit the description for “recovery,” which I addressed a few weeks ago in the SUN News.
But beyond examining the practical and legal application of the term “disability” to people with ASD, I believe it is also important to view this topic through the lens of social understanding. Years ago I had written an article, “Balancing the social teeter-totter,” where I noted that when the scales are tipped in favor of those who are “neuro-typical,” leaving those with ASD at a disadvantage, we all bear the responsibility for stepping in and balancing that social teeter totter. This is where understanding, strategies, accommodations, and genuine kindness come in. We can all make a positive difference in the lives of those around us, even to the point where individuals with ASD do not have to feel as though they are disabled or handicapped, but where their needs are met and their strengths are celebrated, and they are appreciated for who they are.
Here’s an additional thought to ponder: I recently read an inspiring article about Scott Southworth, a US soldier who adopted a young boy with cerebral palsy from Iraq after his tour of duty there ended (Guideposts, July 2008). Although as a young single man, Southworth had been advised against taking on such a huge responsibility, he is relishing his role as a dad and an advocate. He summed up the question of differing abilities through his own definition of being “handicapped,” about which he says, “Being mean-spirited or hateful—those are the real handicaps. Love is what matters.” Southworth’s definition shows that there are many people in this world who do not have ASD, but are more “handicapped” than those who do.
Being helpful and kind can go a long way toward enabling others to live “ably.” It’s important work you’re doing as you promote social understanding all around the world—and many people are benefiting from it!
Laurel Hoekman, Executive Director
The Gray Center for Social Learning and Understanding
www.thegraycenter.org
P.S. Are you planning to do any online shopping this summer? Whether you’re buying airline tickets, clothing, electronics, books, office supplies, or food, or bidding on ebay, many retailers can be accessed through www.iGive.com/graycenter, enabling your purchases to benefit The Gray Center financially (at no additional expense to you). So far we have made over $350 through your willingness to make this connection. Thank you for your support!
My article last week, “To Diagnose or Not to Diagnose,” sparked many comments and discussions, both through email as well as on this blog. It seems that most of the people who contacted me agree that in a perfect world, a “diagnosis” would not be necessary, but instead, people’s needs would be met on an individual basis, and each person would be accepted and celebrated for who he or she is. We know that many factors contribute to our current inability to rely on a simple needs-drive-services model, and that the diagnosis is often both necessary and desirable for those who fit the criteria for an autism spectrum disorder (ASD).
Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, “To Tell or not to Tell?” Who needs to know about the diagnosis? When does the individual himself or herself need to know?
The answer to this question is highly individual, and may change over time (perhaps again and again). Perhaps sharing some of my own story will help to provide some perspective on this issue.
My sons were each diagnosed at a very young age (3 and 2) with Asperger Syndrome. Both eventually ended up in regular classrooms, but with outside assistance (physical, occupational, and speech therapy, both privately and through the school system). When they were very young, their differences attracted attention. Classmates’ parents wondered why they flapped their hands during gym class, why my two-year-old was speaking in complete sentences and singing songs while his classmates were mostly non-verbal, why they had difficulty answering questions even though they were highly verbal, why they seemed awkward when running and climbing, and why they irritated classmates by closing doors that their peers wanted open, by sitting too close to other children on the story rug, or by repeatedly reminding the teacher that it was time to start a new activity. At that stage, providing information about my sons’ diagnosis enabled me to access support from other parents, provided direction and helpful strategies for the teachers and therapists working with my children, and created a more flexible and understanding environment for my everyone. Although it was not my intent, I was surprised to find that some other classmates were also diagnosed after I shared information about my children with parents and/or teachers!
As they got older, both my children and their classmates started noticing (and asking questions about) my sons’ notable strengths as well as some of their differences. At that point (in my case, at ages 8 and 5), I told my sons about their diagnosis, and eventually went into their classrooms to provide more information to their classmates. (I have written an article about how I shared the diagnosis with my sons, which is available on our Articles page at www.thegraycenter.org.) The benefits to providing information at this stage were many; classmates became more tolerant and supportive, the teachers were able to be open about everyone’s differences in the classroom, and my kids were able to discuss (with me and sometimes with others) some of the positives and negatives of their diagnosis and how it affects their lives. At this stage I regularly wrote letters to new teachers to introduce my children, including their strengths and challenges, and the unique attributes of the diagnosis that might affect their performance in the classroom. I also provided access to resources and to techniques that tended to work well with my kids.
Now (at ages 14 and 11), my sons are excelling independently in regular classrooms, without outside supports. They have chosen not to tell people about their diagnosis; a decision that I support. While the information is in their files, and is occasionally discussed as part of relevant discussions at parent-teacher conferences, most of their classmates and their parents probably are unaware of the presence of a diagnosis of any sort.
As my kids get older and move toward high school, college, employment, and dating relationships, I anticipate that it will increasingly be up to them to be responsible for their own success in each of these areas, and consequently, to determine whether people need to know about their diagnosis. (I am aware that adolescents and adults who do not function as independently may continue to need parents or other care givers to intervene and provide assistance in this area).
Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful. Some are related to my recent articles about getting a diagnosis, and person-first language:
1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better enable him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social environment, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.
2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don’t seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where “everyone” knows about the diagnosis except the individual with the diagnosis!
3. How does the individual feel about the diagnosis? Although my children have chosen not to voluntarily disclose their diagnosis at this time, I know other individuals who are eager to share this information with others. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.
4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. In my family, the diagnosis has never been used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why my sons need to work harder in some areas than others, but it doesn’t excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person’s life. In the cases where this has happened, I’ve seen people who view their diagnosis very negatively, seeing it as the source of all the things they don’t like about themselves or their lives. (We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.)
Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you’d like to share information that might be helpful to others, feel free to do so here!
Thank you all for your continued work in promoting social understanding around the world!
Laurel Hoekman, Executive Director
The Gray Center for Social Learning and Understanding
www.thegraycenter.org
Note: I have written the booklet, “ASD to Z” as a means to educate others who need to know about ASD. It provides basic information, support, and hope for those who are looking for a “starting point” –or an easy-to-read resource—for learning more about autism spectrum disorders. The Gray Center is celebrating the fact that since this resource was published, we have given away or sold more than 10,000 copies! If you would like a copy, you can purchase one at a reduced rate of only $2.00 this week at www.thegraycenter.org. This would be a great time to stock up on booklets to give to teachers and other family members! We also have numerous other resources for sharing the diagnosis with an individual on the spectrum.
Staff members at The Gray Center spend a majority of our time answering questions (by phone and email) from people all around the world. These questions often center around a desire to gain information about their child (or the child in their classroom), the need for help with a particular situation (either creative ideas or resources they haven’t tried before, or a new place to take their child to access resources), suggestions for educating others about their child (or themselves, if they’re a person with autism), or ways to involve their child or young adult in more meaningful ways in their community.
Often, we are contacted by parents of children (of a variety of ages) who are just recently being evaluated for the possibility of an autism spectrum disorder (ASD). Sometimes they question whether they should pursue a formal diagnosis.
Naturally, this is only a valid question if the child (or young adult) meets the criteria for ASD. It would not be responsible to advocate giving an individual a diagnosis that does not correctly describe his or her developmental history, and current level of functioning (including strengths and challenges). At The Gray Center, we do not do evaluations or provide diagnoses. However, we often walk parents through the following thought process, hoping that it helps them to make the decision that is right for their child:
1. Is your child being met at his or her current functioning level? That is, are her strengths recognized, applauded, and utilized for motivation, positive peer interaction, and opportunities to offset her challenges? And are her challenges being addressed in a thoughtful, proactive way? Several weeks ago we had a mom in our office who is thrilled with the services her daughter is receiving from her school. The school has created a social skills group which meets regularly, a counselor is meeting frequently with the child and her teachers, the child has a supportive peer group in her classroom and on the playground, and is doing well academically in the classroom. This mom does not feel a need to pursue a formal diagnosis at this time for her daughter, even though she shows many signs of having ASD.
Addressing an individual’s current functioning level in an effective way is of huge importance, given the opportunity to possibly guide a person toward recovery from autism (as I shared a couple of weeks ago), or at least, reaching his or her full potential, and/or increased access to social and academic success.
2. The second thought concerns a “common starting point.” This is closely related to the first point (in fact, a common starting point often leads to a child being met at his or her current functioning level). Does everyone working with the child have the same (or similar) understanding of the child or young adult, and the assistance he needs to reach his full potential? If the adults in his environment consistently believe that he is deliberately acting out, without considering his sensory needs, communication and/or learning differences, and emotional or social struggles, then information about the presence of ASD might help his family, school community, or daycare environment address his needs more effectively. On a more personal level, I knew a young man who realized he had Asperger’s Syndrome after reading a newspaper article about the diagnosis. He commented to his parents, “This is me, isn’t it? And all these years I thought I was just stupid.” He had never been told that he was on the autism spectrum; this information may have saved him from years of self-doubt and a feeling of isolation. Once he knew his diagnosis, and was able to research it and meet other people with similar interests and abilities, he enjoyed a much more positive self-image!
Not only does a common starting point benefit the individual with ASD, but it can also benefit others working on this person’s behalf. Teachers (and other professionals), parents, and employers can attend conferences, read books, or consult with others who have experience working with individuals with similar strengths and challenges. I know one family who has been told that their child has “a brain disorder.” Although his profile seems very similar to those diagnosed with ASD, these parents have no one to connect with to share experiences, no books to read, and no other kids for their child to form friendships with in a place such as The Gray Center. Rather than having the benefit of using common knowledge about autism and what is most likely to be beneficial to this student, teachers instead approach the situation “from scratch,” looking to develop teaching strategies that might help a child with “a brain disorder.”
Can an individual’s needs be met without a formal diagnosis? Most certainly! Is this always the case? Unfortunately, it is not. The question of whether to pursue a diagnosis will need to be made on a case-by-case basis, and possibly be re-evaluated on a regular basis (as needs and abilities change, understanding of the individual increases, and adults rotate in and out of the person’s life). And certainly, there are people who have “recovered” from autism and no longer need to tell people about their diagnosis, as well as people who would prefer not to receive the diagnosis in the first place. (I’ll write more about that next week!)
Feel free to weigh in on this discussion on our SUN News blog at http://graycenter.wordpress.com. Your experiences and opinions may prove helpful to individuals who are currently struggling to answer the question, “To diagnose or not to diagnose?” in their own life.
Special thanks to those of you who are making a formal diagnosis less of a necessity! Your flexibility, willingness to meet each individual at his or her current level of functioning, and desire to communicate with others in that child’s life, are greatly appreciated! Thanks, too, to those of you who are helping to make a diagnosis of autism a less negative experience for those who receive it. As I wrote last week, there are many people who are able to celebrate the presence of autism in their lives!
Laurel Hoekman, Executive Director
The Gray Center for Social Learning and Understanding
www.thegraycenter.org
P.S. No one is required to have a formal diagnosis in order to access the programs at The Gray Center! Watch our web site for information about new groups forming for the fall, our autism film series, which begins at our Lakeshore Office this THURSDAY (with a showing of “Normal People Scare Me,”), and a wide selection of books and DVDs which can help parents and professionals (and individuals on the spectrum) gain a better understanding of the strengths and challenges of ASD, as well as strategies to help! Find out more at www.thegraycenter.org.
April was Autism Awareness Month. There were many activities centered around raising awareness and funds, both locally and far away. I hope, though, that those who watched or participated were able to see the scope of our efforts as being about more than a diagnosis, but instead, as being about people who are uniquely gifted and have so much to offer our society!
If you’re familiar with my Social Response Pyramid(TM), you know that according to this model, everyone has his or her own starting point when responding to input. This unique starting point is comprised of what the individual knows, feels, expects, believes, remembers, etc. The immediate individual context (“My context”) is a combination of interests, abilities, challenges, learning style, memories, past experiences, personality, birth order, ability to integrate sensory input, and medical, physical, or emotional differences or diagnoses, including an autism spectrum disorder.
Each pyramid represents a unique person. For example, a person may be tall, of average build, with dark hair, enjoy sports, have experience working with computers, be somewhat shy and quiet, a bit of a perfectionist, AND have autism.
Until recently, I believed strongly in the need to identify such a person as a person with autism, NOT an “autistic person.” I feel sad when I hear parents or teachers say that they have “normal children” and “autistic children,” implying that one is better than another. Over the last many years, society has been working to emphasize that first and foremost, an individual is a child (or teenager, adult, or person), and secondarily, the individual has a condition that some view as a disability.
I have recently become aware that not everyone agrees with the push toward person-first language as it relates to those diagnosed with ASD (autism spectrum disorder). In fact, there are many such people who argue strongly for the consistent use of the term “autistic” to describe themselves, as opposed to referring to them as people with autism. (This appears to be similar to the movement toward “Aspie” as a designation for individuals with Asperger Syndrome). Like me, they believe that autism is an intricate part of who they are; that it cannot be separated out as distinct from who they are as people. But they argue that the rest of us are simply trying to be politically correct in calling them “people with autism.”
I applaud the desire of these “autistics” to educate people as to their uniqueness and individuality, and their eagerness to embrace the characteristics which identify them as being on the spectrum.
The problem is, we live in a world where autism still isn’t generally accepted as unique and positive, and so using the term “autistic child” can be misconstrued and misapplied to other diagnoses by people who are NOT sensitive to the nuances of these terms. In other words, we should not endeavor to set an example for people who might again begin using terms such as “Down’s Syndrome child,” “diabetic child,” or even, viewed negatively, “autistic child,” losing the ground we’ve gained in promoting their personhood before examining the issues that they may face. We also cannot assume that everyone with ASD feels the same way, and would choose to be known as an “autistic person.”
It’s interesting to reflect on this issue. I’m aware that I’m resistant to the term “autistic” because I feel that it singles out those with ASD as being different from everyone else, rather than first acknowledging their similarities to other people. But the research I’ve done indicates that those who wish to be known as autistics WANT to be different from others; they do not want to be compared to other people, but instead wish to be known by their unique designation.
So from now on my personal stance on this subject is consistent with my desire to promote social understanding; I will now acknowledge BOTH sides of the issue—and the rationale behind each side—instead of just my previous view. From there, I think it should be up to an individual whether he or she prefers to be knows as an “autistic,” or as a “person with autism.” For those who prefer not to be connected officially—in any way—to the term autism, I’ll write more on that topic next week!
Thank you to all of you who are working to promote social understanding! I continue to learn from you, and am a better person because of it!
Laurel Hoekman, Executive Director
The Gray Center
www.thegraycenter.org
P.S. We have many resources available for individuals of all ages who would like to better understand the role that autism plays in their lives. Young people may enjoy the books, “How to be Yourself in a World That’s Different” and “Asperger Syndrome: An Owner’s Manual 2 (for older Adolescents and Adults)”. Younger children may enjoy the Owners Manual 1, as well as the books by Beverly Bishop and Catherine Faherty. We’ve also recently added “Asperger’s from the Inside Out: A Supportive and Practical Guide for Anyone with Aspergers” by Michael John Carley, Executive Director, GRASP (The Global and Regional Asperger Syndrome Partnership). To view our selection of quality resources (including sales and many new titles), go to www.thegraycenter.org
However, it’s primarily my personal experience with individuals diagnosed on the autism spectrum that makes me uncomfortable with talk of the need for a cure. With these individuals, often both the distinctive abilities as well as the “quirks” associated with the diagnosis have combined with their personality and life experiences to make them uniquely them! Looking for a “cure” for something which is so intricately combined with the other aspects of who they are is practically tantamount to trying to cure a person’s blondeness (or any hair or skin color), a persistent drive toward perfection, unusual and intense interests (which often end up benefiting our world in significant ways) or someone’s creative view of life and/or artistic ability. Discussing the need to “cure” this aspect of their personhood implies that there is something inherently wrong with them that cannot be tolerated or lived with, much as we are trying to cure potentially fatal diseases such as cancer, heart disease, and muscular dystrophy.
Several years ago, Carol Gray and Tony Attwood wrote an interesting article, “The Discovery of Aspie.” It contends that we would view individuals with Asperger’s Syndrome differently (and in fact, more positively), if we approached them through their strengths and abilities—as a “discovery of an Aspie,”– rather than through the diagnosis of a person with an autism spectrum disorder. (If you haven’t yet read this article, or would like to share it with someone else, you can find it on our web site on the “Articles” page).
I recently read an article which approached this topic from a slightly different angle. This article, written by Doreen Granpeesheh, PhD, BCBA, and recently featured in the Autism Society of America’s publication, “Autism Advocate” (Volume 50, No. 1), is titled, “Recovery from Autism: Learning Why and How to Make it Happen More.” Once I got beyond my resistance to the term “recovery,” (which initially fostered the same feelings that I have toward the word “cure,”) I found the content of the article to be quite enlightening.
The dictionary defines recovery as, “restoration or return to any former and better state or condition.” The author acknowledges that “there is no consensus today on a definition of recovery from autism.” But given that the diagnosis of an autism spectrum disorder (ASD) is currently primarily anecdotal or based on symptoms, rather than a specific definitive medical or genetic test, the focus on recovery takes us away from the idea that a person needs to have autism removed, and instead, focuses on enabling them to achieve their full potential. Granted, the “norms” that we compare them to are still those of “neurotypical” peers. Since autism still occurs less frequently than “neurotypical” does, we still use that standard of comparison.
Granpeesheh cites the lack of remaining evidence of autism (those symptoms and characteristics which initially led to a diagnosis of ASD) as possible proof of recovery. This may include a child’s ability to be fully integrated into a regular classroom without outside supports, an average or above-average score on an IQ test and a test of adaptive functioning, and a lack of criteria (as defined in the “Diagnostic and Statistical Manual of Mental Disorders—commonly known as DSM-IV-TR, American Psychiatric Association 2000) such that an autism expert (medical doctor or psychologist) could no longer give the individual a diagnosis of ASD.
Has autism “gone away?” Given that there is a strong suspicion of genetic involvement in many cases of ASD, as well as possible accompanying biological and physiological factors, most likely not. However, research continues to show that individuals are “recovering” through exposure to early intervention and a variety of educational, behavioral, and medical interventions. Although autism remains a part of who they are, Granpeesheh concludes that “they are simply learning how to function better.”
At this point, there is no “magical formula” for helping individuals recover from autism (or to function at a level consistent with that of their peers). Practical experience indicates that the answer is different for one individual than it is for another. But I believe that social understanding plays an important role in the potential for recovery from autism! The more that parents, siblings, grandparents, teachers and other professionals, peers, colleagues, spouses, and friends can assist individuals with ASD in gaining relevant social information and strategies for producing effective responses (combined with help meeting basic needs such as sensory integration, accommodating learning styles, help for depression, meeting medical needs, etc.), the more likely it is that individuals will be able to recover from autism!
Regardless of your feelings toward the concepts of “cure” or “recovery,” you will want to read next week’s SUN News as I explore the controversial matter of person-first language as it applies to a diagnosis of autism!
Best wishes as you continue to promote social understanding in your corner of the world!
Laurel Hoekman
The Gray Center
www.thegraycenter.org. Be sure to check out our NEW titles, which we’ve added in the last week, as well as the SALE category which contains titles that will only be available at these prices until we’ve reduced our inventory! (If you live in West Michigan, you can also borrow a wide variety of resources from either of our libraries).
