Expert: Dr. Sharon A. Mitchell - 9/11/2010

Question
QUESTION: Hi Dr. Mitchell,

My 4-year-old son, Sammy, started Tilt I pre-K four days ago.  Today (the 4th day of class), his teacher told me she suspects PDD.  She said she used to work with a boy who had PDD and that Sammy is showing some of those same characteristics.  She told me PDD was on the autism spectrum and that was considered a milder form.  I've been reading about it, and from what i understand autism is a form of PDD (she explained it the other way around#.  Once the initial heartbreak and shock settled in, I called his doctor to make an appt to have him evaluated #schedule 6 days from now#.  Also, I should tell you that Sammy has been in speech therapy for about 2 1/2 years.  he started at 1x/week in our home with a speech therapist, progressed to 1x/week for one hour in a classroom when he was 3.  during that classroom speech class, the speech therapist suggested he be evaluated for behavior social delay.  So we did that, he did qualify for those services too #by a slim margin#.  From there, he was switched to another classroom environment to treat both the speech and behavior disorders 2x/week for 2 1/2 hours each time #5 hrs a week total#.  after about 10 months of this, he was due for his annual IEP, at which time, they suggested he only receive services at his daycare= speech 2x/month and behavior 1x/month.  I took this as a GREAT sign of progression.  Now, I feel like we have started back to square 1.  Any suggestions?....family members think the teacher #whos only known sammy for 4 days) is over analyzing, especially since it was never detected by the specialists he's been receiving treatment from for the past 2 1/2 years.  is it likely they missed it?

ANSWER: It's exciting and scary to send your little one off to school, isn't it? Even if it is just a pre-K and not full-time school.

His teacher is correct - PDD (Pervasive Developmental Disorder) is on the autism spectrum. Autism spectrum disorders cover a broad range. Children on the spectrum may have severe intellectual disabilities; they may also have intelligence considerably above average. They may be so affected by the symptoms of autism that they will require care all their lives while others on the autism spectrum may complete all regular work through school and go on to do well at college.

The labels can be a bit confusing. Autism spectrum disorders are diagnosed through a medical book called the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders - 4th version). In this manual, autism (or properly called Autistic Disorder) falls under the umbrella heading of Pervasive Developmental Disorders or PDD. Also under this heading is the label of PDD-NOS. The NOS stands for the words Not Otherwise Specified. This label is given to kids who don't quite meet all the criteria for the diagnosis of autism but appear to be somewhere on the autism spectrum.

I know this can be quite confusing when you're first reading in the area of autism. To further compound this, a new version of the DSM will be out in May, 2013. In it the diagnostic criteria for autism will be different and some say, simpler with the various subheadings removed. Take a look at it here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

When your son's speech intervention was reduced at the IEP meeting, you were right to take this as a good sign that he was progressing. I'm sure he is.

And, I can see why your family may feel that knowing your little boy for only four days is not long enough for any sort of diagnosis. That is true. The teacher may have been hasty but on the other hand, she was being responsible by sharing with you her observations.

A teacher cannot diagnose an autism spectrum disorder. But in good conscience, she must let parents know of any concerns.

Prior to this, Sammy has received therapy likely in the home or in looser situations. This may be his first exposure to a more formal setting. This pre-K is also a new setting for him.

The teacher will be observing him and comparing him to other children his age. They're all babies at that age and she will be used to many shy, immature, frightened four year olds. This is particularly apparent in the first days of school. The fact that amid all these others, your son stands out is significant.

This does not negate all the great therapy and assistance he has received prior to this. In fact, without those experiences he might be finding Pre-K very difficult indeed. Still, the setting is different and new.

The fact that he experienced a delay in acquiring speech significant enough to warrant services, plus he had a behavior social delay do suggest that he possibly could have something on the autism spectrum. Speech and social delays are common among kids with autism as are behavioral difficulties. The therapists he's worked with over the last year or so may have been withholding judgment until they saw how he responded to therapy and maturity. It is not at all uncommon for autism to not be diagnosed until a child enters the school system and rub shoulders daily with his peers.

I think you have done all the right things - both in the past and now. You've relayed the teacher's concerns to your physician and made an appointment which is approaching rapidly.

To help prepare for this doctor's visit, you might consider looking at some online checklists. These are in no way definitive ways to rule out or rule in autism, but they might add to the list of information you're providing your physician.

The PDD Assessment Scale http://www.childbrain.com/pddassess.html

M-CHAT (Modified Checklist for Autism in Toddlers) http://www.dbpeds.org/media/mchat.pdf
Scoring for M-CHAT http://www.firstsigns.org/downloads/Downloads_archive/m-chat_scoring.PDF

First Signs is an organization dedicated to helping people recognize the signs of autism spectrum disorders. They have some excellent video clips showing typically developing children alongside kids with autism. You need to register to watch the videos, but it's free and there is no obligation. http://www.firstsigns.org/asd_video_glossary/asdvg_about.htm. Here are some of the developmental milestones to observe http://www.firstsigns.org/healthydev/milestones.htm. You might find some of the other information on their website helpful http://www.firstsigns.org/concerns/index.htm.

You're on the right track by checking this out. Possibly you'll go through the process and find that your son does not have autism. You'll be relieved and glad that you have checked everything out thoroughly. If the diagnosis is something on the autism spectrum, all is not lost. Your son has already been receiving the kinds of services he would have had if his earlier diagnosis had been autism.

Either way, this is still the same child who has been in your home for the past four years. A label does not change anything.

Please feel free to write again if I may be of assistance.

Best wishes,

Dr. Sharon A. Mitchell

---------- FOLLOW-UP ----------

QUESTION: Dr. Mitchell,

Thank you soooo much for your insight.  Honestly, you have given me answers in that one e-mail than I have received in the past 2 years from Sammy's doctor, teachers, and therapists.  I have always worried about some of Sammy's different "quirks" and have even on 2 occasions (once to his pediatrician @ age 2 and once to his behavioral therapist @ age 3), I asked right out "do you suspect autism?" both times, the answer was no.  While I was relieved, I also was left feeling unsatisfied b/c I was still concerned WHY he does the things he does.  Your explanation (esp the part where the therapists/teachers may have been withholding judgement) and resource recommendations have already helped me in starting to understand a little more about PDD.  I take comfort in the information/surveys seem to point towards "mild", and am optimistic for Sammy's future.  My family and I thank you.  

Sincerely,
Kerri Tucci

Answer
Thank you for your kind comments.

You mention that you may be in for a long, rough road. Not necessarily. This is still the Sammy you know and love, with the same strengths and challenges, quirks and skills you're used to.

I put a lot of credence in a mother's instincts, so if responses left you wondering, pay attention attention to that little voice that leaves you with questions.

If professionals in the past have been unsure about autism, that could be encouraging that his signs are mild or not blatant enough to be the obvious diagnosis.

When you begin reading online about autism you will find heartbreaking stories. Some children are so very affected by the autism. Others, not as much. If you sat in the back of some classrooms, it might be half an hour or more before you could pick out which child in the room as an autism spectrum disorder.

Rather than getting bogged down in some of the very sad stories, why not read something that is uplifting, while at the same time not painting an all rosy picture? I'd suggest that you read books by those bright, articulate adults who have autism. They can tell you what it feels like from the inside, the strategies they've found that worked for them and the assistance they received from their families.

Try something by Temple Grandin. Temple is likely the most famous person with autism. She's well known in the cattle industry for her research, plus she travels the world speaking about autism. Dr. Temple Grandin is a professor at Colorado State University. Recently HBO made a movie of her life that won Emmys. It's excellent. Like your son, Temple had significant language difficulties for the first 5 or so years of her life.

A good book to start with is written by Temple and Sean Barron (a man with autism). Take a look at it here: http://www.amazon.com/Unwritten-Rules-Social-Relationships-Perspectives/dp/19325

Jerry Newport, a man with Asperger's (a form of high functioning autism) has also written a useful book http://www.amazon.com/Your-Life-Not-Label-Aspergers/dp/1885477775/ref=sr_1_1?s=b.

This next one is not by someone with an autism spectrum disorder but has so many useful strategies for parents. Employing these visual methods made our home life so much easier. http://www.amazon.com/dp/0961678615?tag=autismhelpf0e-20&camp=14573&creative=327

Not all questions will be answered; sometimes we just don't know. The exact label, or even the "why" are not the most important aspects. What we need to focus on is what works for Sammy - which strategies help him to fill his potential and be a happy, productive person.