Thursday, March 02, 2006

Misdiagnosed

A few posts ago we talked about gifted kids who were misdiagnosed as having ADD or ADHD. Cookie magazine's March & April issue (on news stands) has an equally alarming essay about a gifted boy named Alex who was misdiagnosed as autistic.

Cookie is a new magazine, and it's pretty funny -- think Vogue, only instead of the Fendi "it" bag your accessory is a toddler. The back cover ad has children in Kenneth Cole Reaction clothing and one of the articles is about jetting with your family to Sweden. But leaving that aside, "Normal," an essay by Aliza Valdes-Rodriguez, is worth wading through the too-cute spring frocks.

Valdes-Rodriguez's son, Alex, spoke very early. He spoke in full sentences. He wouldn't walk for ages, then just decided to do so and did so. He would become obsessed with one particular game. When he kept speaking of himself in the second or third person, though, his parents became worried. Teachers suggested it might be autism. They had him tested, and the Southwestern Autism Network said that was indeed his issue. His parents were devastated.

Of course, Alex picked up on his parents' devastation, and would talk about them being sad. This was the first clue that he might have been misdiagnosed. Autistic children have an impaired abilty to understand emotions and emotional cues from other people. Valdes-Rodriguez did some more reading, and came to realize what might have happened. "Alex," she writes, "is a brown-skinned boy named Rodriguez in New Mexico, the poorest state in the union. I remembered that when I had suggested to one of the clinicians that perhaps Alex was simply a genius, he chuckled, as if this could not be possible."

But indeed it was possible. Growing up, the writer had to fight to be recognized as gifted herself. Now, the same thing was happening with her child. She got him retested by more autism experts, and they said the original diagnosis was dead wrong. She just had a very, very, very bright boy on her hands.

So why the strange third person talking? The obsessive behavior? These are signs of autism. It turns out that Alex's parents were "colluding to make this kid the way he is," according to the professor of psychology they took him to. Both neglected and misunderstood as kids, the two wouldn't let Alex do anything on his own -- smothering him in a sense. The professor pointed out that the Rodriguez family always referred to Alex as "we" -- as in "Now we're going to put on pants." Alex was just speaking this language style right back.

Once the family became aware of the problem, they changed it, and Alex's "autism" disappeared. The writer has some great thoughts about the struggles of gifted kids at the end, but you shiver to think what could have happened if she didn't keep poking at the diagnosis to see what was true and what was not.

9 comments:

Jackie said...

We are fighting an autism diagnosis right now for our 6 year old. We are fully aware what autism is; our older son is diagnosed (correctly) with Aspergers. Younger son came along and is just plain different - and we did keep watching for any clue that he was autistic. He's not.

But, we are dealing with full blown Dabrowski's overexcitablities (and if you want to give it a diagnosis - sensory integration dysfunction) with this child. His school is pushing for an autism diagnosis because he needs an IEP. He needs a gifted IEP that takes into account his sensory excitabilities. It seems that any "other" diagnosis besides autism requires a specific medical approach and lots of testing and differentiation. But, for a school to place an autism label, it's just a check list of "odd" behaviors! No wonder so many people are screaming about an autism epidemic - kids who don't fit in for whatever reason are being "identified" by schools so that the teachers (who are having to manage class size that are too big and use terrible boring materials due to NCLB) can get some help. It's a very odd chain of interdependant relationships that is developing.

Parents really have to work to stay on top of things these days if their children are in *any* way exceptional.

Anonymous said...

We also had to fight an incorrect diagnosis (of Asperger's Syndrome) for one child and numerous other misdiagnoses for another child. All complicated by a mix of LDs and extreme giftedness.

The biggest culprit in these misdiagnoses is the lack of giftedness teaching offered to educators. When they have a child that doesn't fit in, what do they have to fall back upon?

In our case, they saw a child that preferred teachers to age-peers, could recite a large number of facts, and was intense about various subjects-- their checklists did not include "giftedness", and thus our child got labelled AS. It took over a year of fighting with the school district, thousands of dollars and countless tests to convince them otherwise. The diagnosis of extreme giftedness was there all along, but was disputed by the school "professionals" because our child did not fit the classical stereotype of genius.

Laura Vanderkam said...

Wow- these are chilling stories. It seems like it wouldn't be so difficult to have teachers learn the symptoms of giftedness as part of their training -- but that would require schools of education to acknowledge that there are gifted children and they do have special needs.

Anonymous said...

It is disheartening how doctors and psychologists are throwing around the "autism" label so frequently. I, myself, have been through hell for the past year (ever since my 3rd year olds well visit) when my Pediatrician very politely told me that she thought my son was showing signs of autistic tendencies. One year and 2 months later the doctor has the look of eating crow every time we visit and the Psych. now thinks maybe its ADHD, but won't be sure until he is in 1st grade???? What kind of schools are these folks going to? After 2 months in the Red Clay Early Years Preschool IEP the teachers said they only saw anxiety issues due to a speech delay. At 2 my son knew his abc's (upper and lower case by site), count to 20, all colors, all shapes, etc. Just had a problem getting the language to flow and experienced a lot of meltdowns due to the inability to effectively communicate. The school and teachers have done a tremendous amount of great work to help my son and his true giftedness can now be seen easily. My worries are now what do i do? It is likely that he will not be approved into the next years IEP program and still have another full year until kingergarden due to his October Birthday. Any suggestions?

Webigail said...

I am so glad that I found this blog, as I was wondering if our 3-year-old might be autistic.

He refers to himself in 3rd person, but I realized recently, that it is the direct result of my husband and I speaking to him in 3rd person.

As the child of a retired school teacher, I am all too aware that it's easier for children to be "labeled" rather than treated as individuals, who may just happen to different.

This post confirms that my husband and I need to be more aware of not just what we say, but how we say it, as if will have a profound impact on our child.

devriesclan said...

I have a 23 month old son who is doing some amazing things. He is my third child so I know this is not typical behavior! He knows all his letters, sounds, colors, shapes, etc.. He loves to stack blocks, put puzzles together, and play with any learning toys. He sees letters and words on signs and sounds them out while we are driving in the car. He is extremely loving, social and has an amazing vocabulary. I thought he was just gifted. THEN During the past two weeks three people have mentioned to me that this may be an early sign of autism. That giftedness is an early marker for autism and I should take away all of these learning toys he loves. He has no signs of autism, he is just cognitively very advanced. I am just worried about my baby.Any suggestions or advice about this? It would be much appreciated.

Laura Vanderkam said...

Devriesclan: I tried to email you personally, but that didn't seem to work. I would not listen to anyone except a doctor who's trying to diagnose autism in your child! Sure, sometimes the "symptoms" of autism and giftedness overlap, but there are plenty of children who are one and not the other. If your child loves his learning toys, then please don't take them away. You know your child best, and you are best off following your instincts.

Davidson Institute Staff said...

Dear Parents,

We understand the concern about misdiagnosis and misunderstanding about giftedness. As you may know, the Davidson Institute's mission is to recognize, nurture, and support profoundly intelligent young people and to provide opportunities for them to develop their talents to make a positive difference. We offer a number of programs and services as well as an online database for gifted students, their parents, and the professionals who work with them. Please visit our main website for additional information about the Davidson Institute.

The main page of our website also offers a number of Getting Started resources, including a page for parents. These articles may be of interest:

* Frequently Asked Questions about Giftedness
* A place to start: Is my child gifted?
* The Parenting and Education of Gifted Students
* Small poppies: Highly gifted children in the early years

Based on the topic of conversation, information on the misdiagnosis of gifted children may especially peak readers’ interest. As some of you may know, the following article led to the creation of the book Misdiagnosis and Dual Diagnoses of Gifted Children and Adults. Below are links for these:

* Article Misdiagnosis and Dual Diagnoses of Gifted Children and Adults
* Book Misdiagnosis and Dual Diagnoses of Gifted Children and Adults
* Book review of Misdiagnosis and Dual Diagnoses of Gifted Children and Adults

There are a few noted publishers that offer books to assist in addressing the needs of exceptionally bright young people:

* Great Potential Press (we highly recommend A Parent's Guide to Gifted Children)
* Free Spirit Publishing (publisher of Bringing Out the Best: A Guide for Parents of Young Gifted Children)
* Prufrock Press (we also recommend Parenting Gifted Kids: Tips for Raising Happy and Successful Children)

We hope this is helpful to you as parents of exceptional children.

Warmest regards,

DITD Team

Maleita said...

I have been "on the fence" about my now 7-year old's diagnosis of Asperger's Syndrome which he received at age 5. We were lucky in that the psychologist who did the testing labelled him as a "provisional", essentially saying, "time will tell."

My advice to concerned parents of the toddlers is to continue to encourage your child to grow. Also, many of the early interventions of social skills training can't hurt. As a child who received gifted programming myself, I wish I had had a little more!

Over two years later, his giftedness is blossoming, but so too are many traits that shed light on the accuracy of an autism diagnosis. There IS a population that have both, and it is a very complex, unchartered, new world which I am quickly learning (sometimes struggling) to navigate.

Those that say "trust your instincts" are the most correct. No doctor, no teacher, no person knows your child better than you do.

Having a very mild form of Asperger's Syndrome and being extremely gifted presents numerous challenges both at home and at school.