Expert: Dr. Sharon A. Mitchell - 5/23/2011

Question
Hello, I have a newly diagnosed 2 year old.  I was seen by a developmental pediatrician who is known for giving an autistic diagnosis in order for a child to receive ABA therapy. My occupational therapist informed me after the appointment that the doctor we saw was one who takes patients quickly, without much background and who will diagnose more freely. Our evaluation was very short. The doctor had my son point to a few pictures in a book and work with shapes and blocks, lasting about 5 minutes. My son did everything asked. The doctor thinks my son's intelligence is of normal age level. The doctor informed us that he believed our son is autistic because he does not show much interest in his 10 month old sister, was oblivious to doctor during the appt., and twirls his hair. My son does show limited attention to our daughter, but will interact and play occasionally, will smile at her and rub her head, and has even kissed her. At times, he will kind of pull away, if we try to bring her close to him. My son was exploring the doctors office during the appointment, but the doctor did not go out of his way at all to try and get his attention, although my son did listen to his instructions and did make eye contact a bit. About. A month ago my son discovered my hair and was fascinated with playing and looking at it. About a month ago,my son started pulling his bangs forward to look at them, and will do this throughout the day. I can easily redirect his attention, but am concerned about this being a repetitive behavior. Hair playing seems to be his first and only repetitive behavior. I'm hoping he will grow out of this. The doctor didn't seem to take into consideration all of the other great characteristics my son has. My son is happy, will imitate, laugh, make eye contact, exhibits joint attention, pointing. My son also has a 50 percent speech delay, both receptive and expressive, according to our speech therapist. My son has been improving and saying more and more words weekly. I'm just so confused about this diagnosis and am waiting for another evaluation with our local hospital for a second opinion. My OT thinks I should not disclose our diagnosis, so there will not be any preconceived notions about our son. I would just love any input you might have. I am wondering if you agree our evaluation was too brief to make such a diagnosis? I believe there is just s much grey area. I was expecting a possible pdd- nos diagnosis rather than just autism. The doc said autism is autism to me after I questioned this. Anyway, any advice would be greatly appreciated. Kristin

Answer
Hello Kristin,

You mention that you had thought your son might receive a diagnosis of PDD-NOS. I take this to mean that you felt he likely has something on the autism spectrum, or the therapists you're already working with suggested that possibility.

Kids who receive a diagnosis of PDD-NOS fit somewhere on the autism spectrum but may not fit quite all the criteria required for the label of autism, or more properly, autistic disorder. These terms all fall under the umbrella category of autism spectrum disorders (ASD). The term "spectrum disorder" means that there are a wide array of degree of symptoms and there can also be a wide array of intellectual ability. Some people with autism have severe mental retardation while others have intelligence levels considerably above average. Some people with ASDs are so severely affected by the autistic characteristics that they will require care all their lives. Others with ASD will finish high school, college, hold down jobs and have independent adult lives.

It's not so much the exact label your son receives that is crucial. In fact in the next edition of the DSM-V, the manual used to diagnose such things, autistic disorder, PDD-NOS and Asperger's will all be rolled into one diagnosis. You can read about this here: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94 and see how your son's symptoms match up. This may be why your pediatrician would have said that autism is autism.

If the developmental pediatrician seems to give a diagnosis most helpful for the child to receive services, from a parental point of view, is that such a bad thing? Are you worried that the word "autism" carries with it negative connotations and a poor prognosis? Sometimes this is true but it's more the characteristics of that individual rather than the label. Dr. Temple Grandin is likely the most famous adult with autism. Although she had a significant language delay, she went on to attain a PhD at university and is world renowned not only in autism but in the livestock industry. If you're unfamiliar with Temple, she has written many books and a year ago HBO made a movie about her life.

As a parent, you always feel better when several professionals concur on a diagnosis and course of treatment. Perhaps your OT knows the person at your local hospital who will next see your son and her advice to not mention the previous diagnosis is sound. But, as one who participates in a diagnostic team, I appreciate knowing about prior appointments and diagnoses. That does not mean that we always agree, but we find the information useful.

I understand that you are distressed that your child may have autism. It can be frightening. But you also are already aware that there are some causes for concern with your son's development; you already have him seeing an OT and a speech therapist. These are very good services to help your boy. There are kids who have sensory sensitivities who do not have autism, but some do. There are children with speech/language delays who do not have autism, but some do.

I'm please to hear that your little guy has been improving and his speech is coming along. I'm not sure it's the exact label that really matters. What is important is getting your child the help that will help him reach his potential.

Best wishes,

Dr. Sharon A. Mitchell