Helping families dealing with autism spectrum disorders
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The label doesn’t matter, the treatment does

Posted by Patricia Harkins in Uncategorized - (2 Comments)

Every once in a while, I tell a family their child does not have an autism spectrum disorder, and they are disappointed.  Usually it is an older child with social difficulties, but their early history does not support the diagnosis and their social cognition – their comprehension of other people – is too good.  They may have some criteria, but they are not on the autism spectrum.  Usually the reason for the disappointment is because the alternatives are worse – bipolar disorder, oppositional defiant disorder, conduct disorder.  Usually it is something better suited to a psychiatrist than a developmental pediatrician.  SOmetimes they think their child will get more services if they have this diagnosis.   It is always an uncomfortable session, and I feel like I have to defend my diagnosis.  Still, the parents are struggling with trying to understand their child, and I do the best I can to help them.

I always tell people it does not matter what label a child has.  We could call it all “strawberry syndrome”.  What is important is doing what the child needs.  It doesn’t matter why a child has language problems, what matters is getting good quality speech and language therapy often enough to make meaningful progress.  It doesn’t matter why a child has sensory processing and motor problems, what matters is getting good quality occupational therapy often enough to make meaningful progress.  If a child is in their own world, they need people reaching in and gently pulling them into ours – as in Floortime (see other posts).

I just saw a family with a 3 year old girl I recently diagnosed as High Functioning Autism.  She is as cute as can be.  She made eye contact when I entered the room.  She played with some imagination.  The reason for the urgent visit was she was having 30 minute tantrums and sometimes meltdowns.   These were usually with transitions.  Her parents worried she was getting worse – regressing.   However, a lot was going on at the time, and she was getting a lot of interventions.  She was already making good progress.  I explained to the parents she was probably going through the “terrible twos” a bit late, plus her brain is changing with all  this intervention, and it has to feel weird.  Any milestone is a good milestone, including the terrible twos.  I gave them some techniques to help and sent them on their way.

I remember getting my son’s diagnosis.  The child in the car seat on the way home was the same one going to the appointment.  He was no different.  I was different.  How I viewed him and how I interacted with him were forever changed.  Knowing why he was different informed us about how to help him.  It’s a lot of hard work, but it is almost always fruitful and well worth it.

 

Graduation!!!!

Posted by Patricia Harkins in Uncategorized - (Comments Off)

15 years ago (in September) I was told “Brian has Asperger Syndrome”.  I had been a practicing pediatrician for 3 years, and did not recognize the term.  I thought “did I miss that day of residency?”  I asked “what’s that?”  I was told “It’s like autism, but without the language delay”.  I said, “but he has a language delay!”  ”Well his language will catch up because he has Asperger Syndrome.”

Fast forward to this Saturday.  Brian is graduating from High School.  He is a gifted writer, brilliant in math and science, an actor, and a comedian.  He can do anything he wants with his life.  Does he still have Asperger Syndrome?  Of course he does; it is part of who he is!  Am I proud of him?  Of course I am, Asperger or not, he has accomplished so much.  How did we get here?  As always, lots of hard work.

At times, we were in school full-time with 3 hours a week of speech therapy in school and 2 hours per week privately, plus 90 minutes of OT in school and 2 hours privately each week.  We did all sorts of social skills groups, summer programs, and LOTS and LOTS of Floortime.  In third grade we pulled Brian out of public school in Pennsylvania (the “best” school district in the Pittsburgh area) because they had utterly failed him.  We found out we were no good at homeschooling.  Then I had a chance to take over a practice in San Antonio, and I found the Winston School.  We moved in 2002.

Winston is a school for kids who “learn differently”.  If you ask them, they say “we are not a school for Asperger Syndrome”.  I told them, “but you are a school that can teach him to write”.   What they don’t tell you is about 10% of the students have Asperger Syndrome.  Brian started there in 4th grade, and now is graduating.

Why did Winston work, and public school did not?  Winston’s classes are small (8-10).  They know how to teach visual learners.  They often let Brian use his special interests when he had to write or produce in art.  The most important academic modification was letting him dictate, and then letting him do all his work on the computer once his typing could keep up.  And they love and appreciate him.  His horrendous anxiety about school has diminished, and he loves learning.

The key to educating kids on the autism spectrum is having teachers who love teaching them.  What the school in Pennsylvania saw as deliberate actions from a “bad” kid, Winston saw as the outcome of his anxiety.  With kindness and firmness, they took Brian into their heart.  After 6 weeks, I asked him how he liked his “new school”.  He said “I love it!  I am going to finish elementary school here, go to middle school here, go to high school here, and if they start doing college here, I’ll stay here for college!”  What a turnaround!  Even in Kindergarten, I said “someday, everyone who worked with Brian will see how he turned out, and say “I had a hand in that!” and be proud.

It was a long, expensive, and exhausting road, but worth every minute and every penny.  15 years ago, I was scared.  Now, I am so proud and thankful.  I hope when people are having a hard day with their young child, they think of this and say “that will be us someday”.  Brian is everything a mother could want in a son, aspie or not!

 

 

 

 

 

Superstar patient and his superstar mom

Posted by Patricia Harkins in Stories - (1 Comments)

I just saw a patient whom I first met 9 years ago.  He was 2 years old and one of the first patients I diagnosed with autism in San Antonio.  He did not start talking until he was 4, and his language developed slowly.  At 11, he has really blossomed.  He was part of the conversation, his speech was 100% intelligible, his eye contact was appropriate, and he looked great!  I was thrilled!  His single mother has done a great job.  She met his needs, but does not cut him any slack.  Even when first diagnosed, she took him everywhere, even to Cici’s Pizza – even when he didn’t eat pizza and didn’t like the noise.  She got him the Speech Therapy and Occupational Therapy he needed, did Floortime with him, advocated strongly for him in school, leading to much better interventions than she would have had otherwise.  She is a superstar mom and he is a superstar boy!  This is an example of the thing that works best for kids with autism spectrum disorders – a lot of hard work.  He has come so far because of her.

He is not “cured” or “recovered”.  He is substantially better.  People who say they can “cure” or “recover” your child are usually lying – like the old “Snake oil salesmen”.  When my son was diagnosed 15 years ago, the internet was still very new.  Even then, there was a lot of misinformation and false hope.  I said “Thank God, I’m a doctor.  I can sift through this stuff and tell what’s likely to be real, and what is likely to be bull, who’s done research and who’s making it up.  If it sounds too good to be true, it usually is.  There are no quick fixes in this business.  But there is hope!   For every severely affected child who makes little progress, I see a hundred who take off and make a lot of progress toward adult independence.   My son graduates from High School next weekend at the top of his class, as an actor, creative writer, and digital media guru.  He is what I want for every one of my patients.

 

Study Suggests Autism Rate May Be Underestimated

Posted by Patricia Harkins in medical evidence and research - (Comments Off)

http://www.npr.org/2011/05/09/136066097/autism-may-be-far-more-common-study-suggests?sc=emaf

 

This does not surprise  me.  In our public school in Pittsburgh, we had 5 children identified as on the autism spectrum and another 3 we were sure also were, but they were either not diagnosed or their parents were not sharing.  This in a school of 300 students.   That equals 2.7%, close to the prevalence in this study.  We all knew some odd ducks when we grew up, who couldn’t fit in, but could always fix the AV equipment (audiovisual for those under 30).  Many were inspired by the Space program, and became engineers.  Many are learning they have Asperger Syndrome when their own child is diagnosed with an autism spectrum disorder.  These kids were always around, just labeled differently – retarded, OCD, ADHD, emotionally disturbed, bad kid, ODD, etc.).  Imagine how much pain they could have been saved if they were properly identified and treated!.

 

Happy Mother’s Day

Posted by Patricia Harkins in Stories - (Comments Off)

Happy Mother’s Day to all the wonderful mothers of children on the spectrum, and those who help them (all the wonderful therapists, teachers, aides, etc.)  There is a special place in heaven for all of us.  And for Catholics, you get to skip Purgatory!

My first “official” Mother’s day was when I was pregnant with my daughter, back in 1987.  I was so excited!   She is now a lovely 23-year-old who is planning to be a nurse.  I tell people the shock with your first baby is that you didn’t get the Gerber baby (not the perfect baby).  Your shock with your second is that it’s not exactly like the first one!

When you realize your child has an autism spectrum disorder, it’s another shock.  It is also a loss.  You have to grieve one child as  you begin life as a parent of a child “on the spectrum”.  I only told my parents when my son was diagnosed.  I waited for 3 months to tell my sisters, because I had to be emotionally ready to handle their reaction.  Give yourself the time you need.   You don’t have to tell anyone until you are ready.  When you are, only tell people what they need to know.  Some people (like those controlling access to services) need to know how bad it is.  Some (like your neighbor) may just need to hear he had a language delay, and “he can’t keep up with your very verbal daughters).

Remember to take care of yourselves, because  you are no good to your child if you don’t.

Happy Mother’s Day!

 

 

Floortime

Posted by Patricia Harkins in Uncategorized - (1 Comments)

Today I saw a 2-year-old with a history consistent with an autism spectrum disorder.  He had already started speech and occupational therapy, and supposedly only said “ma” for “Mom”.   He stimmed on train wheels and lined up toys as we reviewed his history.  I got out blocks, and got him interested when I built a block tower and knocked it over.  I used a block to be a “hat” on my head, and then it fell off with a big “UH OH!”  He loved it.  He made eye contact and handed the block back to me.  After a few more times, he started to imitate putting a block on his head, and I said “Uh Oh!” as it fell.  He started to imitate and anticipate my play.  When he was getting overly excited, I pulled back and let him do what he wanted.  He then returned for more block play, with good eye contact and imitation.   I bounced him on my lap while sitting on a ball chair.  Whenever I paused, I waited for his eye contact before bouncing again.  In 40 minutes, I showed his parents how to show him that people are more fun than things.  Floor time is what you should do regardless – play with your child – but in a therapeutic way.  He loved it, approximated several words, and interacted more.  This is what it is all about.  Connecting with a child who resists interaction, having fun, and helping a family is what I live for.  I love my life!

Autism Whisperer

Posted by Patricia Harkins in Stories - (1 Comments)

Where did the title of “Autism Whisperer” come from?  Like many things, it came from a patient.  I was seeing a new patient, a fairly autistic 3-year-old.  As we talked, he stimmed on train and car wheels, then lined them up, and then got upset and started throwing things around.  His parents said once this starts, he can’t settle down for hours.  I grabbed him as he came near me, and sat on my ball chair, and started bouncing.  I hummed softly, and gave deep pressure as I bounced.  He calmed down in about a minute.  I explained to the parents how sensory input can help manage a tantrum, and can be used to help prevent them.  Providing “sensory diet” throughout the day can prevent the tantrums in the first place.  The father instantly said “it’s like you’re the Autism Whisperer!”

When Brian was little, his sensory problems were severe.  He had problems with balance, noise, food, and motor control.  He started Sensory based Occupational Therapy at 4.  I now know I also had significant sensory problems when I was a child.  I was sensitive to clothing, my hair being brushed, water on my eyes, I was very poorly coordinated, and had a very restricted diet.  After Brian had several years of good Occupational therapy, he was in a better sensory place as an 8-year-old  than I was as an adult.

Poor sensory processing can be crippling, and good Occupational Therapy can be the greatest gift you can give your child.  When you understand your child’s needs, you can be a better parent by meeting his needs.  You can figure out what is bothering your child more easily, and become his or her own “autism whisperer”.