Expert: Dr. Sharon A. Mitchell - 3/25/2007

Question
Hello, I am a mommy to a 4.5 year old girl. We suspected asd a little over a year ago. My husband and I had an evaluation done and were surprised she did not get diagnosed. We also took her to our school district to test for developmental delays. We basically got a pat on the back and were told she just needed more "stimulation" and she would be fine. Her test scores on the Vineland were either at age range or above.

For starters, here are the signs I see in her...some of them have resolved themselves but I always think they are important to mention...

When she was a baby she never played correctly with her toys. She loved them and played well, just in her own way. Dolls were only dressed over and over again, there was hardly any imaginative play. Same with doll houses, she would arrange furniture all the time but no real play scenarios. Now, at 4.5 she only likes toys with purpose like video games and the computer. She loves dress up but never pretends to be anything. She likes dolls and will pretend to Mommy them but it does not last long and we tend to help her along the way by telling her they are hungry, tired, etc...

She has always been verbal, her first words were on time and she had a decent vocabulary but she mostly used one word phrases until 2.5. Echolalia kicked in at two and ended about six months later. She also went through a phase of calling herself "you" for about six months as well.  Pronouns were resolved around 3.5. At three she finally branched off to sentences but most of them were memorized. Now, she is spontaneous but she still struggles. Her syntax and grammar are very poor. She says, "You can have this of you want..."  I can go on and on. She has a lot of the same conversations and asks a lot of questions she knows the answers to. Her conversation skills are not as well as other kids her age, but, she can pass to the untrained eye and appear normal. She answers questions ok, it just ends there...no constant back and fourth conversations, no stories. I am worried about Kindergarten next year and needing to explain herself at show and tell or just when she has to participate in discussions.  I don't think she is ready for that yet. She mostly talks at you, rather than with you. She LOVES to talk though. She is nonstop and not considered shy at all. Very chatty and friendly little girl.

She has a repetitive movement when she is excited. Its like a whole body jolt. She rubs her thumbs over her fingers, both hands and distorts her face at the same time. It looks like she is also holding her breath. She started doing this at one and it has been going strong ever since. It happens every day, several times a day. We can redirect her without problems but we cannot get her to use a more socially acceptable movement. We tried for years, she will not budge.  Does this stim mean asd, or, can children stim and not be on the spectrum?  I used to head bang as a kid, only to fall asleep though.  Did I used to stim?  I think it finally went away when I was in first or second grade.  Do kids with autism outgrow stims?

Her memory, scary! She remembers everything. She has such good recall that half the time I don't know if she is right:) She can tell me things from when she was two. She remembers where her toys were bought and who bought them for her. She remembers small details that I have no idea about, my memory is not that good.

Other than that, she does have some positive signs...

Her eye contact is ok. At times I think it can be better but overall, it is considered good by the doctors who evaluated her and school district. She is in preschool now and her teacher tells me she uses excellent eye contact.  Her teachers actually don't think anything is "wrong" with her...they think she is great and the enjoy her very much.  She is not a problem child at all.  She accepts change well, can transition without problems and has no major behavior problems.   

Socially, she seems alright. She enjoys kids and can play well with them. I do worry though about her repetitive conversations though. I think her odd speech issues will become more noticeable as she ages. But, for now, she has a group of friends at school she plays with and talks about all the time. She is always asking for them to come over. She loves the phone and has conversations with her Grandma and her Aunt all the time. With me, she is very affectionate. She likes to be with me ALL THE TIME and although I like it, I wonder if that is normal. She calls me her best friend. If she had her way, we would have our own room and my husband would have his own room:) She loves to rough house. She seems a little tom-boyish. She really enjoys being outside and loves to ride her bike or play soccer.  I do worry though about her bossy tendencies and she used to hug the kids a lot.  It seemed inappropriate but when we asked her to only hug Mom and Dad, she listened and she no longer does this.

Educationally, she is on target. She is doing very well and can even do things that amaze me, like counting backwards from 18. She seems to pick up on things fast, like learning letters and sight words. She knows the labels to a lot of different stores...she likes shopping:)

Despite my worry about her language development, she has always scored high on her speech and language testing. Her receptive and expressive language have always scored well. So, she has the tools to talk, she just lacks the know how to get it out right.

I have had her in OT and her therapist dropped her. She said my daughter was a low needs patient and basically said I can give her treatment at home. The only sensory issue is the stim. She is not sensitive to lights or touch or so on. Her coordination is also ok.  We do brushing and give her activities to do to help with sensory seeking.  The stim is unchanged, after almost a year.

We also had her in speech and she is also no longer in that. Her therapist said that developmentally, she is on track. Her sentence length and vocab were fine, so, she suggested peer interaction to help her with pragmatics. We uped her school hours and see some improvement but I think she needs more help than that...

Well, sorry to ramble. I am just looking for some insight. As of today her only diagnosis is sensory dysfunction and developmental language disorder. Both so "mild" we are struggling to find her help. I know she is not a classic case of autism but the more I read of asd's, the more I wonder...

She also seems to flying under the radar. I KNOW something is up but when she is at school or infront of a doctor she appears fine. They look at me and wonder why I worry... They are not spending enough time with her though. I spend ALL my time with her and see it, so, I know...

Does this sound like asd?

Answer
This little girl's lucky to have such astute parents. Whether or not she actually has an ASD, she'll do well in your home.

You're quite right about the trouble professionals can have diagnostically when they only see a child for an hour at a time. It's also difficult to get a good handle on a child's socialization skills when you don't observe her in a group of her peers.

If you're still feeling that something is amiss, you may have to wait until she's in a kindergarten situation and can add the teachers' observations to yours.

That's encouraging that you saw improvement after your daughter's speech therapy sessions. If pragmatics is now the major language weakness, I agree with your therapist that that's best developed in a regular play session with other kids.

It's also encouraging that the OT did not see your little girl as high needs compared to the other children that she sees.

Sensory dysfunction can lead to unusual sort of play patterns. Do you feel that her sensory issues are resolving? There are many things you can do at home to help a child with sensory dysfunction. Have you familiar with the information at sites like these:

http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm

http://www.sensoryint.com/faq.html

http://www.sensory-processing-disorder.com/

http://www.suite101.com/article.cfm/aspergers_syndrome/62722

This one talks about ways you can help your school prepare for your child:

http://specialchildren.about.com/od/sensoryintegration/a/DSIschool.htm

Kids with autism generally have sensory issues; not all kids with sensory dysfunction have autism though.

If you wish to look further into whether not your daughter may be displaying characteristics of ASD, there are specific symptoms associated with the various autism spectrum disorders. You can read about them and diagnosis here:

http://www.psychiatry.emory.edu/PROGRAMS/autism/pdd.html

And in more medical detail here:

http://www.nichcy.org/pubs/factshe/fs20txt.htm

Here is a short, free, online checklist your could look at to see if you think your son is showing characteristics of Asperger's Syndrome:

http://www.udel.edu/bkirby/asperger/aspergerscaleAttwood.html

Here's a checklist on characteristics of autism:

http://www.hmc.psu.edu/psychiatryservices/child/outpatient/autism/Revised%20Auti...

These checklists are not definitive and do not mean that your child has or does not have autism. They may provide you with some information that you can take to your doctor, though.

It's frustrating when you feel that something is wrong but the child's symptoms are so situation-specific or so subtle that the diagnosing professionals do not witness them. It may also be that her symptoms fall mainly within the normal range of functioning for her age, albeit at the far ends of the normal range. Professionals would then not be able to give her a label, in all good conscience as her symptoms don't deviate far enough from the norm. Symptoms can also be harder to see in children who are very bright, compensate well and have received good teaching at home.

If your little girl does has an ASD, you will likely see more symptoms emerge or become more pronounced as she enters more structured learning

In the meantime, no harm has been done. You've taken her to OT and to SLP. You've seen medical people. You've enrolled her in situations where she has contact with other children and even increased her hours there. You're doing all the right things to help her grow and move forward.

For now, here are some things you can do to help your daughter better develop her pragmatic skills:

http://www.asha.org/public/speech/development/Pragmatic-Language-Tips.htm

http://www.asha.org/public/speech/development/pragmatics.htm

Don't worry. You're doing the right things to help your daughter. All is not lost if your child does not have a formal diagnosis and is not  seeing a host of therapists.

Progress with children is not necessarily made by professionals. Caring, knowledgeable, involved parents are the best teachers your child can have.

Sharon A. Mitchell
www.autismsite.ca