Expert: Dr. Sharon A. Mitchell - 7/16/2011

Question
Hi Sharon,

I know that you can't give a diagnosis online but I was just looking for some validation that I am going down the right path.

My daughter is 18 months old and I have had concerns for her for quite some time. I found it very difficult to get someone to listen earlier due to her young age but when she was 16 months old I just couldn't ignore it any longer. I will run through some of my concerns.
- Often doesn't respond when being called, even if I am right next to her and saying her name over & over again.
- She has no recognizable words yet, she does babble alot
- Does not seem to understand what we say to her, for example if I ask her to go to daddy she doesn't even look in his direction so is not understanding that is dad.
- Doesn't understand simple instructions
- Doesn't gesture or point
- Doesn't follow my gaze or if I am pointing at something will not look in that direction
- Lack of eye contact, although she does make contact sometimes
- Has never been a cuddly, affectionate child
- Has no real interest in toys, she does play with them sometimes but would rather just pull everything out of the kitchen cupboards & drawers. She does love music.
- Very active
- Not a big eater & a bit picky
- Doesn't sleep through the night
- Some head butting
- She doesn't mind being around other children but she doesn't    play with them. She does play with her sister sometimes and will laugh & smile when I tickle her etc.
- She loves adults, particularly men, almost to the point of it being odd. For example she doesn't really know our doctor but was wanting to sit on his lap.
- Some hand flapping, head shaking & tippy toe walking but not to excess.
- Bowel problems. She has never done solid poop's this was one of the first things I raised with my doctor & she has since followed a lactose free diet but not much has changed.

Their are a few other things but I am feeling a little frazzled and confusing myself but they are my main concerns

Now I will run through what I have done so far.
She has had a few ear infections and since I knew that would be the first thing they would look at I had her hearing checked at 16 months. She did have glue ear with a mild hearing impairment. According to the doctor it was probably not enough to affect her development this much. She has since had grommets inserted but nothing has changed in terms of her development.
I have also booked her in for assessment with a Speech Therapist and have been referred by my GP to a pediatrician who I will see on the 26th of this month.
Like I said at the beginning, I know you can't diagnose but I was just wanting to know if you think the possibility of a ASD diagnosis being made is reasonable and what I can do to start helping her now as the waiting time for services where I live is very long.
Also do you agree that the Glue Ear couldn't have affected her to this extent given that she is so young?
When I was pregnant with her I had a condition that carried the risk of her growth being restricted & although I raised concerns towards the end of my pregnancy I was ignored and she was born overdue & very small. Could this have had an effect on her also?

I do have 2 older children who were both very well spoken and affectionate as toddlers so I noticed at a very young age that she just was not like them. I know you can't compare as they are all different but the differences were so big that it made me worry. I am sorry about the length of this letter but I just needed to vent all my concerns. Thanks for listening

Answer
Hello Georgina,

You are certainly on the right track and have already done a lot for your daughter.

Given the observations you make, my first recommendation would be to have her hearing checked, exactly what you have done. Glue ear or otitis media can affect a child's language development due to reduced hearing but I understand why your physician would say that that does not account for the degree or array of developmental delays you see in your little girl. I imagine you've already researched glue ear extensively, but in case not, here's an article that provides some basic information: http://ehealthmd.com/content/what-glue-ear

My second suggestion would be to have an evaluation by a Speech Language Pathologist (SLP), which again, you have already done. The SLP will be able to give a good opinion as to how much the glue ear may have contributed to her language delays.

I do not think your concerns are without ground, especially since you have two other children as comparisons.

First Signs has a nice video glossary where you can watch typically developing kids of varying ages alongside their more typically developing peers. You must register before viewing the videos, but it's free and there is no obligation. http://firstsigns.org/asd_video_glossary/asdvg_about.htm

This next link is to a checklist you can do online. It requires that you type in a name but you could substitute any name. After hitting Score at the bottom of the page you'll receive a rating, based on the information you provided. This by no means is a definitive test for autism, but simply a screener that may lend more information.

The M-CHAT is another screener sometimes used with little ones. Here's a look at the test itself: https://www.m-chat.org/. Again, this is something you can do at no cost, online.

Here is another online screener you could look at: http://pediatrics.about.com/od/autism/l/bl_autism.htm?page=0&start=1

There are a variety of other tests that can be used to help gather information for an autism diagnosis, such as the ADOS, CARS, STAT, etc. Unfortunately there is no one definitive medical test that says this child has an autism spectrum disorder and this child does not. Diagnoses are made based on screeners, parent observations and the experience and judgment of a team of professionals. Sometimes, especially when a child is young, it is a difficult call and you may be told to return in another year or so.

That does not mean that life stands still while you await word on a diagnosis. There are lots of things you can be doing at home and likely are already doing. The SLP will likely give you suggestions to work on.

Here is a chart of speech and language development typical for kids between age 1 and 2 and at the bottom of the page of suggestions for parents:  http://www.asha.org/public/speech/development/12.htm

I know you have likely heard a lot about the importance of early intervention and it's true that this can help. But while you wait for a possible diagnose there are many things you can do at home. As well, you can be thinking about your daughter's needs and those of your family and what approaches might fit well.

When you're looking at possible programs, I think it's key to keep in mind that while there are certain characteristics common in autism, each person is unique. Because of this, it would be hard to say that there is any ONE method of treatment for children with autism, just as you could never say that there is just ONE way to learn to read. Or ride a bike. Or make a paper airplane. Some strategies may suit certain kids, their families and classrooms better than others.

The best programs might take from various methods and use what works best for each individual child.

You might want to consider relationships. Making a connection with a child with autism is key to making progress. There are many ways you can go about this. Here are a few theories and methods you could consider:

Greenspan's Floor Time - http://www.coping.org/intervention/floortm.htm and http://www.floortime.org/

Dr. Gutstein's Relationship Development Intervention - http://www.rdiconnect.com/ and http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.2214591/k.C45/Relationship_Dev...

Most methods of helping kids with autism work on:
- engaging the child's attention
- building relationships
- encouraging communication

While that may not sound like much, really it is. If you look at the attention aspect alone, you need to have an understanding of:
-  executive functioning (http://www.icn.ucl.ac.uk/2004/hill04TrendsCognSci.pdf)

- central coherence (http://dissertations.ub.rug.nl/faculties/medicine/2003/n.d.j.van.lang/)(http://en.wikipedia.org/wiki/Weak_central_coherence_theory

- sensory influences
http://www.indigodreams.net/articles/sensory-sensitivities.htm
http://www.autism.org/interview/ljk.html

Communication, even for highly verbal Asperger's kids is a problem. (It's possible for such a child to have good verbal skills yet weak language skills). Auditory processing is frequently an area of weakness. Many of the undesirable behaviors kids with autism show stem from their difficulties in making their needs and desires known and in understanding what it is we're asking of them. You might want to read through some of the back issues of SLP Linda Hodgdon's newsletters on using visual strategies to increase communication and decrease behaviors. You can find back issues here: http://lindahodgdon.com/newsletters-mar-07.html

Also, you can download her free e-book called, "Seven Critical Core Skills to Teach Young Students with ASD" here: http://autismstuff.com/online/ebooks.htm

Along with visuals, social stories should play an important part in any autism program:

http://www.polyxo.com/socialstories/
http://www.thegraycenter.org/

Using visuals is certainly one thing you can do right away that may improve life for all of you.

Here are a few other treatment models you could look at:

Dr. Barry Prizant's Scerts Model (SCERTS stands for Social Communication (SC), Emotional Regulation (ER) and Transactional Support (TS) - http://www.scerts.com/ and http://www.commxroads.com/SCERTS.htm

TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children - http://www.teacch.com/info_primer.html and http://www.autism-pdd.net/teacch.html

Pivotal Response -
http://psy.ucsd.edu/autism/prttraining.html and http://www.autismteachingtools.com/page/bbbbfg/bbbbqc

Applied Behavior Analysis - http://www.mental-health-matters.com/articles/article.php?artID=293 and http://www.behavior.org/autism/

You and your little girl may benefit from an interdisciplinary team consisting of such people as special educators, psychologists, speech/language pathologists, and occupational therapists. Each holds just a little piece to the puzzle that is autism.

While it's important to look at what the research is saying, I believe it's even more important to listen to those articulate adults who have autism spectrum disorders and learn from their experiences. A few books I'd recommend are:

"Autism: An Inside-Out Approach" by Donna Williams (http://www.amazon.com/Autism-Inside-Out-Approach-Innovative-Developmental/dp/185...)

"Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger's Syndrome" by Jerry Newport (http://www.amazon.com/Your-Life-Not-Label-Aspergers/dp/1885477775/ref=sr_1_1/104...)

"Emergence - Labelled Autistic" by Temple Grandin (http://www.amazon.com/Emergence-Labeled-Autistic-Temple-Grandin/dp/0446671827/re...

Thirteen year old Luke Jackson's "Freaks, Geeks and Asperger Syndrome" (http://www.amazon.com/Freaks-Geeks-Asperger-Syndrome-Adolescence/dp/1843100983/r...)

And, while this latter one is not written by a person with autism, Mark Haddon's novel, "The Curious Incident of the Dog in the Nighttime" is a great portrayal of a young teen with autism (http://www.amazon.com/Curious-Incident-Dog-Night-Time/dp/1400032717/ref=pd_bbs_s...)

As you investigate all the things people say about working with children with autism, don't forget to listen to the child. Rather than following any one particular method, the child may tell you what's right for her.

Your daughter is lucky to have such an alert, proactive mother.

All the best,

Dr. Sharon A. Mitchell