What are the signs of Asperger’s Syndrome and how do they differ from Autism? What should moms do if they suspect their child has either? And how does the Autism Society of America REALLY feel about Jenny McCarthy? Dr. Cynthia La Brie Norall and Beth Brust, authors of “Quirky, Yes, Hopeless No” answer Breezy Mama‘s questions.
Your new book, “Quirky, Yes, Hopeless, No” talks about Asperger’s Syndrome—can you explain exactly what this is? How does it differ from other forms of Autism?
Asperger’s Syndrome is a form of autism. Often called High Functioning because those with Asperger’s (named after an Austrian psychiatrist in the 1940′s who recognized a group of males that had verbal language and seemingly normal intelligence but significant social delays and behaviors similar to autism) can be very articulate and bright. It’s on one side of the “autistic spectrum” where more classic autism (perhaps someone who doesn’t talk and is very stereotypical in their mannerisms) would be. The spectrum has grown considerably over the past 10 years and the numbers that are growing the most are in this range. A child can get an early diagnosis of autism but when language comes and true measures of intellectual ability are noted they can move into the “high functioning range” and appear very much like a person with Asperger’s Syndrome. However, based on the diagnostic criteria, if they haven’t spoken language at the age of 2 (and putting words together in phrases by the age of 3) they can’t be considered “Asperger’s Syndrome”. So these individuals are technically called “high functioning autistic or HFA”.
How has Clay Marzo, a professional surfer with Asperger’s, been able to accomplish so much when others have a hard time making a friend?
It’s good that you ask because I can refer you to Quiksilver’s movie on Clay called “Just Add Water“. This movie describes Clay’s challenges socially yet his uncanny ability to “read the waves”. Tony Attwood, Ph.D. — as well as known in this field — is interviewed talking about Clay. His Asperger’s Syndrome actually contributes to why he is such a good surfer. It’s a wonderful film and all of my staff have to watch it as part of their professional development. (Click here to purchase movie from Amazon.)
When someone says their child is “autistic,” most people from my generation think of Dustin Hoffman in “Rain Man.” Are there many different forms of Autism?
Yes there are. As noted above there is “classic autism” or some call Kanner’s autism. However, Rain Man was more moderate or possibly savant because of his splinter skills. These are skills that appear to be untrained and most likely come from special interests such as numbers and are usually involved in patterns. Some demonstrate musical genius or other skills yet can’t talk in a way to communicate with others. Most that I treat are somewhere between moderate and high functioning with the majority having verbal language (or developing it) and are quite intelligent. It is a myth that those with autism have mental retardation. Actually those with autism can be quite intelligent in very specific areas. Then there are those like we talk about in the book that are awkward socially and have very significant sensory issues (which is anywhere on the spectrum) and we like to call those the ones who are “quirky” or “aspie”. It’s all about how their brains are wired and though it is considered a disorder, there is such hope for many of these individuals.
Although your new book concentrates on Asperger’s, you deal with all sorts of autistic kids. What are some signs that a parent should watch for that may show their child is autistic?
From a very young age social referencing is important. The typically developing 6 month old is very interested in faces, any faces, and will engage in peek a boo with strangers. These children point to reference something (such as a plane in the sky) as they develop what we call join attention. It’s not just about talking, though that is what most concerned parents go to the pediatrician to ask about . . . it’s about whether they understand that their spoken language is meant to communicate more than getting their needs met. Most pediatricians in California use something called the CHAT (childhood autism in toddlers checklist) to look for specific signs between 18 and 24 months of age. Some items considered by 12 months of age include:
- not responding to name
- not looking at people
- not following the pointed finger
- not making a point to make request or show interest
and then those at later stages include:
- no shared smiles or warm joyful expressions by 6 mo of age
- no exchange of sounds by 9 mo of age
- no babbling by 12 mo of age
- no back-and-forth gestures (eg, pointing, showing, reaching, waving) by 12 mo of age
- no single words by 16 mo of age
- no meaningful 2-word phrases by 24 mo of age
Some of these signs include ways the child plays with toys. Typical children use the toy in a representative way. Children with autism may simply spin the wheels of a car or train or choose to line up their objects in a repetitive way. Sensory issues (sensitivity to sounds, lights or touch or prolonged toe walking that seem unusual) should be reported to the pediatrician. Of course, a diagnosis of autism is NOT based on only one of these observations but a certain range of observations that are noted in the checklist which is then used as a referral to a specialist.
If you think your child may be showing signs of autism, should you take them to their pediatrician, or go straight to an “autism specialist,” as yourself?
Always start with the pediatrician who then can make the referral. You want to rule out other medical issues. Sometimes the pediatrician will refer to a neurologist who will consider these medical concerns such as a seizure disorder. However, I do want parents to know that if the pediatrician doesn’t seem as concerned that they can seek out the developmental specialist in one of the Children’s Hospitals or someone like myself who specializes in autism. Additionally, if the child is under the age of two they can seek out the Regional Centers (Department of Developmental Disabilities in California) OR if the child is over the age of 3 they can seek out an evaluation through their local school district.
Some warning signs, such as a toddler talking late, could just be, well, late talking—how can you know the difference?
Late talking should always be looked into further. I’m assuming the question is the difference between late talking and autism and you’d need to look further into the behavioral and social challenges that come with autism. What I’m trying to say is that it is so much more than just the talking concern. However, that is what gets most parents in to see the specialist. Both my children were late talkers and neither are on the spectrum. For my daughter it was the chronic ear infections that caused hearing delays. For my son it was a speech impediment. It is important to note that Albert Einstein was a late talker as well. And he is thought to have had all of the signs of Asperger’s Syndrome, posthumously. However, his first words were “the soup is cold” and when asked by his parents why he hadn’t talked before he said something akin to “I didn’t have anything to say.”
If your child is diagnosed with autism, will he be able to live a normal life (go to school, etc?).
Absolutely and that is the whole point of our book. It depends on good intervention (not quantity but quality) and parent involvement in the process. It also depends on what the child brings to the dance . . . so their abilities as well.
What is your view on Jenny McCarthy’s idea of the diet affecting autism, and the fact that her child is “cured”?
I am certainly NOT a Jenny McCarthy fan. I feel that she speaks about ONE child with autism. There is a saying among members of the Autism Society of America and that is: “Just because you know ONE child with autism doesn’t mean you know AUTISM.” She has a lot of resources at her disposal and all she preaches is the vaccines and the diet. She ignores all the intervention she has been able to resource for her son. And if you were to meet her son I’m sure you’d find him a bit “quirky”. I think she’s done a terrible disservice to autism and to the field. For more on how some moms feel please check out an article in O Magazine in September, 2009 called “An Inconvenient Youth.”
Lastly, what is your take on the influx of autism? Do you think vaccinations and autism are linked?
I beseech all parents to please research this hyped up myth. Eight studies have been done and yet none have linked the vaccinations to autism. I fear that many childhood diseases that will affect our children (even with death) will come back due to unfounded claims that vaccines, a virus, caused this neurological disorder when in fact we knew in 2001 because of the work at UCSD that viruses had nothing to do with the overgrowth in the brain that occurs between the age of birth and 2 years of age. For more on this I refer your readers to the work by Dr. Eric Courschesne (his information is contained in our book).
Co-Author of “Quirky, Yes . . .” and Aspie parent, Beth Brust, had this to add:
I hope that QUIRKY will help everyone — parents, grandparents, teachers and anyone else living or working with children with Asperger’s — to be more patient and more understanding of these quirky, intelligent, well-meaning kids.
Before getting upset at seemingly defiant behavior or odd actions, I hope adults ask the child “Why?” Their different wiring makes the answer rarely what we would expect.
And I hope readers will see that through a calm, rational approach, it is possible to convince Asperger’s kids to cooperate and to avoid major scenes or meltdowns. Asperger’s kids want to be at peace just as much as their parents and teachers do.
QUIRKY really is the book that I wished I could have found when the doctor told us, “Ben has Asperger’s Syndrome” when he was in third grade. I wanted a book like Dr. Spock’s where you can pick it, find the issue of the moment, get a quick explanation and be told what works, and put it down.
Or you can read the whole thing, but the chapters stand alone and readers can skip around. It’s less daunting that way, plus many parents and teachers don’t have the time to read a book all the way through anymore.
As for Ben, I was already calling him my puzzle child even before the diagnosis. He would do these unusual things, or react so differently than my other son, that I kept feeling like each time I figured out what was going on with that issue, it was like finding another piece to the puzzle that was and is my son. It’s was very gratifying to be able to share such insights along with Cynthia’s expertise and wisdom for a broad audience.
Your book has good tips for moms dealing with neurotypical (non-autistic) “meltdowns”–can you share some of these tips?
I’ve had teachers, especially, tell me that the information in QUIRKY is applicable to their others kids as well, not just the Aspies. That’s probably because Dr. Norall is using cognitive behavior techniques which do apply to children in general, I suppose, but she’s tailored them and homed in on Asperger’s kids in particular.
In the “Meltdowns” chapter, I did include what works for Ben–me staying calm, asking questions, trying to help him put things in perspective (which helps ALL children when their parents do that), and then after we’ve talked, encouraging him to go to his room, listen to music (which calms him) and play with LEGOs…yes, even at 18, Ben still finds that LEGOs have a calming, creative effect.
What makes meltdowns so tricky is that there are usually many underlying reasons for these sudden outbursts which Ben can’t figure out on his own. It’s hard to get them to the surface to help him identify what’s upsetting him.
The inability of Asperger’s kids to figure out their feelings makes it a real challenge as the parent. Yes, I know we all struggle, sometimes, in recognizing our true feelings, but with Aspies, it’s pretty much all the time. They’re wired to recognize their rational/intellectual side, not their emotional side.
Dr. Norall is a licensed educational psychologist who has specialized in the diagnosis and treatment of children and teens with Asperger’s syndrome for more than twenty years. As founder and clinical director of Comprehensive Autism Services and Education (CASE), Inc., Dr. Norall is an educational and behavioral consultant who oversees a team of therapists, social coaches, and group leaders. As founder of the Friends’ Club launched in 2000, she has created a safe, special place where children and teens with Asperger’s can come together in small groups on a weekly basis to learn social awareness and “people” skills. Based in Carlsbad, California, satellite Friends’ Clubs are now in northern California and Hawaii. Dr. Norall lives in San Diego with her husband and two children. She can be reached at email@example.com
Beth is an award-winning author of 13 children’s books and articles published in the Los Angeles Times, San Diego Union, and The Horn Book. A graduate of Stanford University, she has a son who was diagnosed with Asperger’s syndrome in third grade. Now a teenager, his social skills have noticeably improved by attending the Friends’ Club. This is the book that she wishes she could have had all this time. She lives in San Diego, California, with her two sons and their noble but unpredictable dog. Beth can be emailed at: firstname.lastname@example.org
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