Expert: Dr. Sharon A. Mitchell - 4/9/2007

Question
Hi Stephen, thank for taking the time to read this.
 Recently my daughter was asked to revisit the doctor who confirmed our pediatrician's diagnosis of autism.  This doctor is older and hasn't seen my daughter in about 2.5 years.  At the time of her diagnosis she was just shy of turning 4yrs old and was put on the I.B.I (Canadian version of ABA)waiting list.  Like every parent we overloaded on info changed just about everything we did in how we did anything involving her.  As you can imagine this coupled with a normal baby sister 2 yrs younger her development began to become on par with with her sister's and higher due to school.  Now this doctor is saying that she is too social, and may not have autism.  He is on the fence,  he didn't want to say she was misdiagnosised.  He wants to put her on meds and see if there is any change.  He spent half an hour with us, noted she made, although not maintained, eye contact.  His point for her social awareness was that she put down his magnifying glass when he approached her.  She had been examining a new light that popped out she received form school.  We have been forever saying we don't touch things that aren't ours.  she is the type that has to walk around a new environment and touch/feel everything. It makes shopping interesting:)  Her action is pretty much what her younger sister would in the same situation.  She quickly dropped the magnifying glass.  Interestingly enough after a sec or two she went right back to looking at her light - with the magnifying glass!! When I looked at various sites as to the social aspect of autism she fits all the criteria, including some of the social deficits.  I think that my daughter has learned to adapt.  Her development has pretty much mirrored her sister's I can carry on  conversations with my 4 yr old that I cannot do with my 6yr old daughter with autism. I'm not sure what my question is , I guess I just want to see what your thoughts would be.  Since she just started IBI and the first thing they do is an assessment to see where she is I'm going to see what they say.  My apologies for going on, but I am concerned that my daughter might lose her supports such as her Educational Assistant, Special Services Worker, her IEP to name a few.

Thank you so much
Sincerely,
Janine Foster

Answer
Janine, your question to Stephen was placed into the autism question pool. Since I live in Canada as well, I thought I'd add some comments.

It's very difficult for a diagnostician, in a one hour or less visit to get a thorough reading on a child. They don't get to see her in varying situations, in social settings and don't have a historical picture.

What you're describing is something I have seen often. At a certain age, a child may show many signs of an autism spectrum disorder. Then parents do all the things they can do help, often coupled with the school and therapists. And the child gets better.

By that I don't necessarily mean that the autism has gone away, it's just that the child learns and acquires new skills. Eye contact is often something that is worked on (as it's a social niciety we like to see) and a child who used to avoid all eye contact can now look a stranger in the eye, even if fleetingly.

As you put it, your daughter's adapted. And that's a good thing. It's what you wanted.

But what it does is muddy the diagnosis somewhat as the child may not show all the characteristics she once did or not show them to the same degree.

You probably don't care what label your child has or even if she has a label - you just want her to do as well as she's able. But without a diagnosis, you're afraid that she will no longer have access to some of the services that would be there if she was autistic.

From what you describe, your two children are currently functioning around the same level. So, even if your current physician is unsure if a diagnosis of autism is still correct, the delay you describe may qualify her for some assistance anyway.

Having an Educational Assistant nearby brings comfort to a parent. It makes you feel that when you're not around, there is another caring adult attending to your child and helping her. That's true and EA's do wonderful work.

But there can be a downside to a child having an EA as well. Dependence. I've seen children become far too reliant on an EA. They internalize the belief that they can't function on their own, that adults don't believe they can do it by themselves. They can also become jealous when that EA is not glued to their sides or helps other children.

I have a hard time thinking of any instance where I believe a child should have an adult by her side all the time. Encouraging independence is crucial in any child, no matter what her level of functioning.

The statistics on kids with Asperger's or high functioning autism are dismal after they leave high school. Many bomb when they attempt post-secondary education or the world on work. Part of this could be because they were "over-helped" when in school.

I've had many parents say that their child can do better and achieve higher marks with EA assistance. That's likely true. But is it the marks that you're after or the skill in how to navigate the world and problem solve and struggle and succeed that is the key concept? Klin and Volkmar in their book "Asperger Syndrome" answer the question of how far can these kids go by saying it depends on their cognitive and language abilities and the compensatory strategies they master. They talk about the many capable kids they're seen fail because of their inability to manage their lives on their own.

What I'm trying to say is that if your daughter is no longer considered autistic and that means she'll have less EA time, all is not lost. It's not the end of the world and she could still progress nicely. In your province, is it only kids with a diagnosis who have an IEP? Could it be any child who has a developmental delay or who learns differently? You might want to check with your provincial Department of Education to be sure.

I've also known parents who are in terror of losing their ABA or IBI services. There are some groups that believe that ABA or IBI is the ONLY treatment for children with autism. While I am not in any way knocking ABA or the success it's had with some kids, I have difficulty with the concept that there is just ONE way to help any group of people. We all have different patterns of strengths and weaknesses and personalities. Unlike what we thought thirty years ago, we now know that there is not just one correct way of teaching reading that would work for all students.

While IBI may be very helpful for your little girl, if she must wait for a while before beginning or does not have access to it at all that does not mean that she cannot develop and grow in skills. There are kids with autism who have had IBI who are doing very well. There are kids with autism who have had no IBI and are doing very well.

My son is an example. During his school years, he had neither ABA, IBI, an EA or special ed placements. He's had diagnoses of PDD and of Asperger's. He's now away at university, living on his own. While his situation may not be the same as your daughter's, as a special education consultant with a school district, I have definitely seen kids do very well without an EA of their own.

Your upcoming IBI assessment is a good place to start. They'll take a look at her current level of functioning and work on strategies to help her grow. They may be able to provide useful diagnostic information to your physician.

Best wishes,

Sharon A. Mitchell
www.autismsite.ca