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Autism vs. Aspergers Syndrome: Signs Your Child Might Have Either and Why Jenny McCarthy Upsets the Autistic Community

quirky 300x300 Autism vs. Aspergers Syndrome: Signs Your Child Might Have Either and Why Jenny McCarthy Upsets the Autistic Community

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.)

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Dr. Norall has established a Aspie "Friends' Club" where children with Asperger's Syndrome come together and hang out.

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.

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At the Ruben H. Fleet Science Center during the Friends' Club Summer Camp.

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.”

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Demonstrating the Quiet Quilt which is a weighted quilt that gives sensory feedback (some of our friends enjoy the weight and they sleep/rest better).

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.


Cynthia Autism vs. Aspergers Syndrome: Signs Your Child Might Have Either and Why Jenny McCarthy Upsets the Autistic CommunityAbout Cynthia La Brie Norall, PH.D:

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 info@cynthianorall.com

beth Autism vs. Aspergers Syndrome: Signs Your Child Might Have Either and Why Jenny McCarthy Upsets the Autistic CommunityAbout Beth Brust:

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: beth@bethbrust.com

breezy deal1 Autism vs. Aspergers Syndrome: Signs Your Child Might Have Either and Why Jenny McCarthy Upsets the Autistic CommunityClick here to purchase Quirky, Yes—Hopeless, No: Practical Tips to Help Your Child with Asperger’s Syndrome Be More Socially Accepted for Amazon’s low price of $11.55.

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Comments

  1. I am all in favor of behavioral approaches towards coping with the manifestations of ASD in children. But I cannot begin to tell you what a disservice it is to parents of ASD children to describe the link between vaccines and autism as a “myth.” Dr. Norwall does NOT have a child on the ASD spectrum or with Asperger’s. Only a person without a child who developed neurological symptoms culminating in ASD in the hours following a vaccination and ONLY a person without an ASD child who has vastly improved following biomedical treatments to address toxic exposure, including a switch to the diet recommended by Jenny McCarthy (and MANY, MANY physicians) could possibly promote such an opinion. I contend along with many other parents, that ASD is a biological disorder, linked to an autoimmune response, and primarily related to exposure to toxins, including those found in vaccines, environmental pollutants, and the diet.

    Here is a comment reprinted from a response to a US News and World Report article:
    Genetic Testing for Methylation Pathway Defecits

    There is a test called Methylenetrahydrofolate Reductase (MTHFR)

    Thermolabile Variant (DNA Analysis) that will tell you if your methylation pathway is working correctly. This is important because it effects glutathione production. Glutathione is the body’s detoxifaction agent. Without glutathione, your body cannot excrete heavy metals and toxins and cause neurological damage. This is responsible for the increase in autism, ADD, chronic fatigue syndrome, etc. Many parents blame the toxins in vaccines for causing autism but fail to realize that bisphenol A ( plastics) found in the baby bottles also played a huge role as well as the accumulation of environmental toxins. Low glutathione levels have been found in autism, ADD, depression, bipolar disease, dementia,schizophrenia, alcoholism, kidney stones, etc. Low levels could also increase your risk of developing cancer from toxins. I urge all parents of autistic children to test for this MTHFR mutation. This mutation runs in my family and contributed to my son’s development of autism. After I gave him glutathione, my son regained his speech after a month. Glutathione is also being studied by Stanford University. I hope the researchers will develop gene therapy for MTHFR mutations because this has the potential to significantly reduce the effects of environmental toxins that are responsible for the explosion of autism. Autism clusters are found near toxic waste sites and states like California, where the fires that burned down homes are releasing toxins from building materials into the air.
    LINDA ARAUJO of FL

  2. Here is an excerpt from a USNews and WR article along with 2 links to related articles:

    “Finally, are certain groups of people especially susceptible to side effects from vaccines, and can we identify them? Youngsters like Hannah Poling, for example, who has an underlying mitochondrial disorder and developed a sudden and dramatic case of regressive autism after receiving nine immunizations, later determined to be the precipitating factor. Other children may have a genetic predisposition to autism, a pre-existing neurological condition worsened by vaccines, or an immune system that is sent into overdrive by too many vaccines, and thus they might deserve special care. This approach challenges the notion that every child must be vaccinated for every pathogen on the government’s schedule with almost no exception, a policy that means some will be sacrificed so the vast majority benefit.”
    Bernadine Healey, M.D.
    http://health.usnews.com/blogs/heart-to-heart/2009/04/14/the-vaccines-autism-war-dtente-needed.html

    http://health.usnews.com/articles/health/childrens-health/2009/04/28/what-the-autism-gene-finding-means-for-parents.html

  3. Jenny doesn’t upset my autism community. In fact she’s helped my community.

    Why is it always the parents of the high functioning kids who just don’t understand that there are kids out there who need a lot of help? There are kids who don’t talk at all, don’t answer to their names etc. A little 7 year old died today in Canada. He wandered away from his home Saturday. They found him yesterday and he died today in the hospital. While searching for him everyone called out ‘pizza’. Not his name, but ‘pizza’. Why? Because, he didn’t respond to his name, but knew the word pizza because it’s something he loved to eat.

    I doubt his parents just thought of James as ‘quirky’.

  4. Wendi Eusebio says:

    Hi Alex! It’s your cousin-in-law and I just wanted to say, what a great website! I just stumbled upon it and wanted to say kudos to you! I wanted to comment on this article. As a mother of a 3 1/2 year old child, Evan, diagnosed over a year ago with ASD, after reading what Dr. Norall said, I have to disagree with Dr. Norall on some, not all, of her points. I have read each of Jenny McCarthy’s books and I cried as I read each one. Whether you are a mother of a “typical” child or a special needs child, I don’t understand how you cannot be touched by her son’s story and the many other mothers who shared their stories in her books. In my opinion, Jenny McCarthy has been courageous in sharing her journey, opening up about her son’s ups and downs with ASD and letting parents of ASD children know what, in her experience, has worked and not worked for her son. It may not be the “recipe” that works for all ASD kids, but at least she makes an effort to edcuate parents of ASD children out there as to the different options that are available to ASD kids, besides just behavioral therapy, speech therapy, occupational therapy, physical therapy, etc. It is the medical community that wants to short change parents of ASD children from full knowledge and only provide a few, limited options which can work and help ASD kids. But shouldn’t parents be entitled to know all the options out there so they can do their own due diligence and research these options to decide for themselves if they want to or not want to try these different things? While my son has done fantastic with all the therapies out there, from my experience, he has also improved greatly with the special GFCF diet and some of the treatments and vitamins that the medical community has not embraced. In my experience, the progress he has made in the last year is due to EVERYTHING we have done, not just the therapy alone, not just the diet alone, not just the vitamins and supplements alone. For years, people have looked to diet, vitamins, natural herbs and supplements as a way to stay healthy….look at the health/vitamin industry, it is a multi-billion dollar industry. So, why, when it comes to ASD, does the medical community decide to “poo-poo” it?? Patients with high cholesterol and heart problems are encouraged to change their diet to minimize health problems. But, of course, it is not the only thing these patients can do to help their condition. So, why is ASD different? And if parents are seeing dramatic improvements with some of these “non-conventional methods”, whey then does the medical community look down and totally disregard it? It just does not make sense to me. How do you tell parents who actually see the difference in their ASD children that it does not work?? As for the research between vaccines and a link to ASD, when I see results that were NOT funded by a pharmaceutical company, then I will take the results seriously. Until then, I cannot say that what Jenny says about vaccines is completely incorrect and false. I was shocked to find that the publisher of “What to Expect When You are Expecting”…a book that parents flock to when becoming pregnant, published a book about vaccines, which was actually funded by….you guessed it, a pharmaceutical company. An acquaintance worked on a commercial shoot for the book, and it was only then she found out who actually “paid for” this book to be published. But, if you look in the book, they don’t tell you that it’s the pharmareceutical company, the people with a vested, financial interest in selling vaccines, telling you the vaccines are safe. I mean come on, that’s like the tobacco company publishing a book that cigarettes are safe…and we all know how that story turned out. So, like I said, until something unbiased and thoroughly researched comes out, I’d rather err on the side of caution then not, as a parent wouldn’t you?? Anyway, I didn’t mean for this to be so long winded, this medical community vs. ASD parents really irks me…at the end of the day we all want these kids to have the best opportunities they can have, so why can’t everyone work together to further this goal? Thanks Alex for creating a website for mom’s to get together and share!

  5. Kathryn Wood says:

    Well – My kid has both explosive head overgrowth, and knowing the toxicity that he was exposed to in his first trimester – I think he is clearly gestational… AS WELL AS vaccine damaged! Undeniable. You can just imagine my terror (and my husband’s). He’s a research chemistry prof, by the way. Imagine both of our horror – and the preschool’s. Within weeks our child was gone. It is truly shocking and disturbing when you join the “vaccines damaged my child” camp. I (and he) HATE being in this maligned camp. By the way, if you are so HOT on Dr. Courschesne, go check out the UC Davis MIND Institute where he works, and you’ll see what the MIND Institute has to say about the environment/asd. Hey, here’s a fun one… their sib studies – their ASD infants are showing autoimmune problems strait away – long before ASD signs. Hmmm… But, you’d know that you learn all about the immune system when you are getting your PhD in psychology.

  6. Paula Haigh says:

    My now 8 year old daughter has been sreaming,yelling,hitting me,hitting herself,the walls,doors anything near her,throwing herself on the ground.She wasnt rolling over until she was 6 months old,she wasnt walking properly until 2 years old,she could say 6 words at 18 months old,speech therapy started when she was 4 years old,i could understand her a little bit from her having speech therapy but i vould understand her better when she was 6 and a half,her speech was alot better by 7 years old and i could have talks with her where it made sense.January this year(2010) shes decided im not talking and she makes more noises than talking and she keeps arching her back,making hand movements all the time but she wont tell me what they mean,everyday she screams,yells,hits,kicks,bites,throws herself on the ground,she wont dress herself i have to dress her,its a struggle to dress her it takes me up to half an hour sometimes longer,its a struggle to get her out the door and to school because of the screaming,yelling and everything she does,shes been late for school alot,my friend picks up 3 mornings a week,ive got to pick her up kicking,screaming,yelling,hitting to get her in the car cos she wont walk outside,it takes me 5 minutes to get the seat belt on her because she fights me so much about having it put on her.When she gets to school my friend says she gets out of the car and goes to her classroom like nothing even happened.The mornings,afterschool,bedtime and weekends are the worst with her,she gets upset easily,distracted easily from everything around her,she has staring episodes where she doesnt blink for 30 seconds to a minute at a time.I have researched autism and adhd and my daughter has signs and symptoms of both,but not that many of aspergers syndrome which i also researched,her paediatrician has told me since she was 4 years old that nothing is wrong,but he doesnt live with my daughter i do and he sees her for half an hour every six months.She also doesnt like sleeping which she has been like this since she was 2 years old,bedtime is 8pm and she can still be awake at 11pm,12am,3am,5am,she just wont sleep.She slept 6 good nights a week ago and she still woke up screaming,yelling,hitting herself,was upset but she wouldnt say why,when she does sleep ok which doesnt happen much she still is unhappy,so it doesnt make a difference if she has a good night sleep or not.She has started running away from the after school care people.She doesnt like loud noises she puts her hands over her ears,she doesnt like the overhead speaker at school,she doesnt come in after the bells goes at school she has to be made to come inside every play time it was the same at kinder and prep grade,shes in grade 1 now.Getting her to and from kinder now school was hard she always threw herself on the ground,screaming,yelling,hitting,biting,scratching,kicking,it was and still is the same now shes 8.She done the same things to her kinder teachers when she was there for 2 years.She never played with her toys properly she would take them out of the toy box and put them back in but thats it she never actually played with them,she doesnt really play with toys properly even now.She wouldnt play with other kids until she was 6 years old and then she stopped playing with other kids again this year(2010),she prefers to play alone,she big time has imaginary friends,she always talks to.She wasnt crawling properly until she was 9 months old.I have been late for my brit study course alot because i cant her out the door and when i finally get her dressed and to school its 10am sometimes 10.30am and school starts at 8.45am every day.I have made her a schedule calender for every day so she knows whats happening each day but it hasnt helped and ive got her a rewrd chart too but thats not helping either.I have the timer go off at 8pm so she knows its bedtime and screams,yells,hits herself,the wall,the bed and she pulls all the blankets and sheets off her bed.She has been taking her clothes off since she was 2 and a half years old to now 8 years old,shes home from school or anywhere and 30 seconds later she has nothing on,i even tried just putting a singlet and underwear on her when its bedtime because she keeps taking her pyjamas off saying shes too hot but she takes the singlet and underwear off too saying shes too hot still.I dont know what to do.I have tried alot of things to try to keep her calm but nothing works at all.

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  1. [...] Autism vs. Asperger Syndrome: Signs your child might have either — Breezy Mama [...]

  2. [...] new book, Quirky Yes, Hopeless No, offers readers some insight into Autism, particularly Asperger’s Syndrome. The [...]

  3. [...] areas may not come to your attention until your child enrolls in school.  I recommend reading Dr. Norall’s interview about Autism and Asperger’s Syndrome for information relative to pragmatic language development, [...]

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