It seems like the word “Neurodiversity”, and the ideas of respect for autism rights that it represents, comes up more and more frequently online and in print. Yet, at the same time, I find that most of the individuals I meet, frequently parents of children with autism or Asperger’s, as well as adults who think they may be autistic or have Asperger’s, have never heard of the word neurodiversity. In this posting, I wanted to list some links to websites that deal with neurodiversity, so my readers can explore these ideas on their own.
The Oxford American Dictionary that came with my Mac, copyrighted in 2005, does not list the word “neurodiversity”. You’re going to need something more up-to-date. You could start with with WordSpy.com, “The Word Lover’s Guide to New Words.” This site defines neurodiversity as: “The variety of non-debilitating neurological behaviors and abilities exhibited by the human race.” Of more interest is that the site lists sample citations of the word, in the New York Times and Geocities, and the earliest citation of the word, in the Atlantic Monthly in 1998.
For a different, and somewhat more positive, definition, try Everything2.com which defines neurodiversity as “The concept that variance in neurological structure adds needed diversity to the human race. The celebration of that diversity. Or, a word referring to the variety of ways in which the human brain can be wired.”
You can find a very inclusive listing of neurodiversity resources and websites at neurodiversity.com
For a frequently cited voice of the autism rights movement, go to ASAN. The Autistic Self Advocacy Network, defines itself as:
“.. a non-profit organization run by and for autistic people. ASAN's supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.”
The founding president of ASAN, Ari Ne’eman is featured in the public service announcement, “No Myths”, along with other autistic individuals.
And, just this week, Salon.com published "I am not a puzzle, I am a person", by Elizabeth Svoboda regarding the “autism culture movement.”
The online resources are endless, and I’m sure I missed some very important ones, but this list is a place for people to start exploring. If I have missed your favorite site, please send me a comment.
Do couples with autistic kids get divorced more frequently than other couples? Shockingly high divorce rates are quoted frequently, for example, Jenny McCarthy on Oprah, where she said it’s 90%, or Dr Colleen Allen, of the Henry Ford Center for Autism and Developmental Disabilities, who is quoted online as saying it’s 86%. Even John McCain, in his 2008 statement on autism for the ASA’s rally stated that “divorce rates of parents of children with autism are well above the national averages.” (Autism Advocate, 3rd Edition, 2008, Vol 52, p. 58.) Unfortunately, the data behind these numbers never seems to be included, so it’s hard to know if they are valid.
What is well documented and readily available is Easter Seals’ Living with Autism study. Easter Seals, with Mass Mutual Financial Group, and the Autism Society of America, conducted an interactive Harris poll. They interviewed US residents with children 30 or younger, where the child has either an Autism Spectrum Disorder or no special needs diagnosis at all. A total of 1652 parents of children with autism were polled, and there was a control group of 917 parents who didn’t have children with special needs. Many issues were studied, including detailed listing of parents concerns, such as their adult children’s quality of life and ability to live independently. It’s an online poll, so of course there are questions about biases, such as which families chose to participate in the study. The study focuses heavily on looking at financial planning questions, not surprising regarding the sponsorship. Many of the findings aren’t exactly shocking, such as the fact that parents of the special needs children were highly concerned with their child’s independence and quality of life, and that they struggled financially and had concerns about their children's education.
But, there was one section of the report that looked at divorce statistics. The report states, “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.” (p. 39) And the rate? 30% for families with autistic children, 39% for the control group without special needs.
There’s also some information on these divorced families with children on the autism spectrum. The study found that in about half of the divorced families, one parent had sole custody of the child, and 71% of the time the child lived with the parent full time. Certainly, this can be a stress on the single parent, especially when coupled with the fact that over half of families with ASD reported having little or no support from their extended family.
Interested? You can download a copy of your own at the Easter Seals website.
It’s may not be fair, but some parents have a much easier job than others. Depending on your child’s temperament, personality, sensitivities, and how well that all meshes with your own temperament, personality, and sensitivities, you may find that parenting is pretty easy. Or, on the other hand....
Some kids are just more challenging than others. With near perfect parenting that is optimized exactly for them, they may do pretty well. But, when the slightest thing goes wrong, these challenging kids can start to fall apart. Kids with autism, Asperger’s, and ADHD are frequently pretty demanding. They need consistency, compassion, and a great deal of patience. Even then, things still go wrong sometimes. Most parents of special needs kids have horror stories of tantrums in the grocery store, disapproving teachers, or being kicked out of preschool programs.
Other kids are very easy. Even when the parents are inconsistent, overly lenient, or extremely strict, these resilient kids still manage to do pretty well.
I think that most children improve socially, academically, emotionally and behaviorally when their parents exhibit a high degree of parenting skill, and when they tune right in to what their kids need. But that doesn’t mean that the kids who are not doing well aren’t getting good parenting. They just may demand a different style of parenting, or they need near perfect parenting.
It can be difficult to be the parent of these challenging kids, especially when the parents of the easy kids seem to be judging your parenting skills. I’ve worked with some very challenging kids over the years, and I see how hard their parents try, and how difficult it can be. I teach a lot of parenting skills to families. It can be tricky, because teaching someone how to be a more effective parent doesn’t mean that they’re not doing a good job already. It could just mean that they happen to have a child who is especially demanding, or who knows just how to pull the least useful behaviors from the parents, or a child who just doesn’t happen to fit in well with their family’s style.
All parents make mistake and all parents can learn to do a better job. But please, don’t be too hard on yourself as a parent if you happen to have a very demanding child.
One defining symptom of Asperger’s and autism is a difficulty in reading social signals, body language and facial expressions. But, lots of people struggle with this, not just those on the autism spectrum. Although for neurotypicals, reading others tends to be instinctive, everyone, autistic or neurotypical, can learn to pay attention and improve their skills.
There’s a fun self test on the BBC website where you can practice identifying real and fake smiles. The test has videos of 20 people smiling which you can analyze. During the test you can only watch the videos once, but if you want to study them repeatedly, you can review them after you get your results.
All individuals, whether they have a diagnosis of autism or Asperger’s or not, are faced with stressful situations. This might be a job interview, an athletic competition, a performance review with a boss, or all the testing that students have to go through. Some people just seem to sail through these experiences, others get completely caught up in the stress. A big part of how well you manage is related to how well you can soothe yourself, and that’s all about self talk.
The idea of self talk was parodied by Al Franken as Saturday Night Live character Stuart Smalley, where he repeatedly affirmed “I'm good enough, I'm smart enough, and doggone it, people like me!” But it’s more than just a joke. Positive self talk has its roots in well researched psychology techniques such as Cognitive Behavioral Therapy (CBT). And, self talk can be effective for not just serious mental disorders like depression and anxiety, but for the more commonplace stresses we all face.
So exactly what is self talk? It’s those little comments running through your head when faced with a tough situation. Pay attention next time to what you’re telling yourself. Faced with a challenging math problem, is it something helpful like, “I can do this, I’ve done lots of practice problems.” or , “OMG, I’m awful at math. I’m always so stupid!” When you encounter your critical boss, do you think, “Oh no, he hates me! He’ll be complaining about my report.” or can you shift to a more helpful, “”I did a great job on that report. He’ll be pleased with it even if he doesn’t comment.”
Learning to notice and even change your own self talk can be the first step towards success.
Running on Ritalin is not just a book about ADHD or medications for children. Instead, it takes a broader look at the issues involved in diagnosing, treating, and prescribing for our children. Although the book focuses on Ritalin and ADHD, much of the material is also applicable to other situations, such as those children with other diagnoses, such as autism, and those taking different medications. Since Running on Ritalin (Bantam Books, New York) was published in 1998, it may be a bit dated as far as medicines and statistics, but the advice for parents and the general themes more than make up for this.
Dr. Diller is unusual in that he was not only trained as a Pediatrician, but also as a Family Therapist at the Mental Research Institute in Palo Alto, CA. Because of this unusual background, Dr. Diller is able to discuss treating his clients with both family therapy and medication. In his book, he takes a moderate, middle of the road stance, defining ADHD as stemming from both brain chemistry and environmental factors, such as school and parenting demands. The author looks into many of the factors involved, such as the impact of modern society and educational expectations, the strain on school resources from having so many children needing special services, the demands on parents, and the ethics of medicating children.
That moderate, balanced view, backed up by published research, is really the strength of this book. As far as treatment, Diller recommends a multimodal treatment, which may include medication, individual and family counseling, and special educations services, as appropriate. He backs this recommendation up with both published studies, (Unfortunately there are not a lot of those out there.) and anecdotes from his own patient experiences. As a therapist myself, I know that my clients may need a variety of different approaches in order to function at their best level. As a scientist, I always appreciate when authors back up their statements with data and published studies.
Dr. Diller is also balanced in his viewpoint of the diagnosis. “... I feel a bond with those who want society to appreciate and adapt to the range of diversity in children’s personalities. On the other hand, I recognize that the ADD child must learn to cope with socially approved expectations and responses, and that this may sometimes require the use of medication. It seems to me critical to raise questions about a society where several million children are taking Ritalin. In everyday terms, however, children and families must adapt to social norms, while we work on broader levels to make room for all kinds of people with all kinds of strengths and weaknesses.” (p. 217)
There’s also an interesting chapter on special accommodations for those with disabilities, both in school and the workplace. This has always been a tough issue, and it only grows more so as our school budgets get stretched tighter in this economy.
In general, this book probably raises as many questions as it gives answers, but they’re important questions, questions we all need to be asking.
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals.