Autism: Making the diagnosis
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Autism is an easy diagnosis to make in children.
When a child is very affected, he has little to no language or communication skills, he rarely (if ever) makes eye contact with other people, he likes to do the same thing over and over, he is fascinated with looking at parts of objects, he never points for what he wants nor looks to where his parents point, he never brings toys to his parents to share with them, and he basically seems "lost in his own world". Few would disagree that a child with those behaviors is likely autistic.
Autism is a difficult diagnosis to make in children.
Often, however, the story is not nearly so straightforward. The diagnosis of "autism" encompasses a huge range of behavioral and developmental challenges, from the moderately or severely autistic child I just described, to a child with so-called "high functioning autism" who makes pretty good eye contact (although not the same as a 'typical' child), who is interested in and emotionally related to people (again, not the same as a 'typical' child), who has decent (albeit unusual or somewhat delayed) language skills, who has no obsessive interests or unusual body movements, etc.
In such a child (especially if younger than 4 years), it's not always clear where the line that separates the autism spectrum from a "quirky", but non-autistic child (or adult) should be drawn. For this reason, a professional who admits his/her uncertainty about the diagnosis may be demonstrating sophistication and expertise, not indecision and a lack of competence. In such cases, competent professionals may honestly disagree. Here are some reasons why...
Dr. P's Pearl #1
There is no specific test that clinches the diagnosis of Autism Spectrum Disorder. The diagnosis is only made by observing and testing the child's behavior and development, and by being sure that these behaviors are what other important people in the child's world (parents, teachers) are seeing. Then it's the professional's job to put all of this information together and decide on a diagnosis.
Dr. P's Pearl #2
Especially when the diagnosis is uncertain, parents should be aware that some clinicians are "lumpers": they like to give a single, unifying label to things. Faced with a number of ambiguous behaviors, they are more likely to call them due to the diagnosis of autism.
Other professionals are "splitters". In the face of uncertainty, they label and address each of the child's behaviors separately (e.g., "developmental language disorder" + "sensory issues" + "social skills delays") without lumping together into a single diagnosis, such as autism.
[FYI, I tend to be more of a splitter. Since every child has unique constellation of challenges and strengths, when a diagnosis of autism is questionable, I tell parents he has "(The name of the child)'s Syndrome."]
Dr. P's Pearl #3
If you are confused by the labels we use, it's because you should be. You will hear the terms "Autism", "Autism Spectrum Disorder", "Pervasive Developmental Disorder (PDD)", and "Asperger Syndrome". These terms are intended to describe the severity of the autistic symptoms. Because there are often questions on who fits into what label, I prefer to use the term "Autism Spectrum Disorder" for all kids, as the words imply the expected differences in how autistic children look and function.
Dr. P's Final Pearl
I don't need to tell you that a diagnosis of autism is serious stuff. If you are concerned about a child, given how difficult it can be to make the diagnosis, you want to find an experienced clinician to do the evaluation. It really doesn't matter if s/he is a developmental pediatrician, child neurologist, or child psychologist.
What does matter is that s/he has sufficient experience and knowledge to put together all the information into an informed, sophisticated diagnosis, and that you trust him/her to be a reliable guide and support no matter what the future may hold.
Related Topics: Autism Advances: WebMD Special Report, On the Cutting Edge of Autism Treatment
Technorati Tags: autism, autismspectrumdisorder, aspergersyndrome, diagnosingautism
8 Comments:
Dr. P,
There aren't enough developmental pediatricians on the planet to see every child whose parents are concerned he/she may have autism.
Why do you and your colleagues continue to "advertise" such services on the web? You are writing checks your colleagues can't cash.
Too many of your colleagues are diagnosing our patients with ICD-9 codes that did not exist 30 years ago. Perhaps some of these children are receiving therapy that they would not otherwise get, but at a cost.
The cost is the loss of the dignity of difference. Instead, a diagnosis, by definition, labels a child with "something wrong". The consequences to the child and to his family can be devastating.
Thanks, man.
Flea
Dr. P,
Informative yes, yet you fail to mention the only scientific and validated treatment which parents should investigate, "ABA" Applied Behavioral Analysis overseen by a "BCBA" Board certified Behavior Analyst. My experience, two children diagnosed with extreme variation on the Autism Spectrum. The child doing very well received an intensive 1:1 ABA program starting at age 3.
Dr. P,
With all that you've said about diagnosing Autism, there is another consideration to be made...appropriate services for the child. If the child is on the high functioning end of the spectrum, and he/she is diagnosed by a splitter, like yourself, many school districts and regional centers will not fund any comprehensive early intervention services for the child. And since insurance generally won't pay for any of the services, many parents will go into debt (or denial) to pay for (or not at all) beneficial services.
Having my daughter diagnosed with Autism at 3 years old was a nasty pill to swallow; however, because of that diagnosis, she was able to get the best treatment possible and is looking forward to 1st grade in a mainstream classroom virtually unaided.
If she had been given a cocktail of diagnoses, I highly doubt she would be where she is today. And we, as parents, certainly wouldn't have had quite the handle on what we're dealing with had she received several different "labels".
For the record, our journey with Autism has not struck us as anything being wrong, but rather very different and unique. Refreshing actually. Challenging definitely. But not wrong.
Thanks everyone!
I am a psychologist working in the Los Angeles area, and what the doctor has said about the complexities of diagnosing autism is true. Parents, if you are concerned about how any kind of doctor is making a diagnosis, PLEASE ASK QUESTIONS! It is also true that the availibility of treatment is a serious concern, as mentioned by Comment #3. It continues to amaze me that most of the burden for treatment has been placed on schools, the government and parents themselves. On the other hand, insurance companies have gotten away with sharing almost none of the expense. Parents, please write your insurance companies and ask for assistance, even with speech therapy, and try to enlist your professional's help by asking them to write a letter of diagnosis.
To "Flea:" I see many parents who have been told to "wait a little while" when their child's speech is delayed, or that their child is "slow" or "different" or "just hyperactive" so "don't worry." Many children, it is true, eventually improve on their own, but it is a RISK to wait out a concern regarding delays or other worrisome behaviors. Aside from developmental pediatricians, many professionals diagnose autism: psychologists, psychiatrists, and neurologists, for example. Autism is a common enough diagnosis these days that parents should get referrals from people they know and trust, such as parents of kids in their Mommy and Me groups or daycare centers or classrooms. A diagnosis is ONLY a loss of dignity to those who LOOK DOWN ON PEOPLE WHO HAVE ONE, but for other people, it is a KEY to open a DOOR for intervention and progress.
Ramonita Rodriguez
My son Lucas will turn 3 next week and has speech delay. He says a few things and plays with anyone who plays with him. He does not respond or calls on us for anything he will pull us if he wants something. He has been evaluated by speech therapist, pychologist and special educators and has not been diagnosed with autism or anything else as of yet. He was approved for speech therapy and a special educator therapy.I am worried. I am confused with all the information given to both my husband and myself. I am worried but it will not hold me back from doing what ever it is I need to do to help my son. The pychologist did say that he has some censory issues and motor skills issues. I am confident that he will develop censory and motor skills with therapy.
When my nephew was 3, I noticed some peculiarities - he hated singing, he wanted to always pretend to be inanimate objects - like a rock, his coordination was weak, he would not look at you. But his speach was perfect and he was very intelligent. I then ran across an article on Aspberger. I gently tried to let my sister know that I was concerned. Her pediatrician thought he would grow out of it. Only when he started school did she begin any type of investigation at the concern of the teachers who were telling her the same thing. He is now in 4th grade and just now getting the in-depth analysis he should have gotten then - High Functioning Autism. And he is much worse off for it now as his behavioural and social skills were not addressed earlier. He is also on medication for depression. Now that the 8 wk analysis period is over, he is returning to his 'normal' classroom which I think will only magnify his differences and difficulties. There is no way they can afford private schooling and face it, the avergage public teacher does not have the time or energy to deal with this type of behavioural special needs kids. I have also read that adults with this syndrome could be at a higher risk for suicide. What can the extended family do to help this child to lead a fulfilled life? What support can we give the parents? There is so much (almost too much) information to absorb and homework for the parents on what to do next. It's great to obtain a diagnosis for your own understanding but you need to address what comes next.
Dear Dr.P and parents,
I have a 22yr old and a 8 yr old. Both were considered the strange type, autisic manners exactly alike except 9yr old is worse/ ocd. I was diagnosed in 2005 with Lyme Disease Both boys were born with it. Please consider this posability as it is very real and affects the brain and body in many ways. Mimics almost everything. God Bless the children
G sorry keyboard prob.
There is nothing more damaging than to hear your quirky three year old boy is autistic. By some quack with a check list who has known your child less than a morning. Then it takes months, sometimes years of counter reports and experts to make that label go away. You as a parent know your child. Be their advocate. Do do what's best for them and avoid labels as long as you can!
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