Helping families dealing with autism spectrum disorders
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We need Theory of Mind for ASDs

Posted by Patricia Harkins in Stories - (5 Comments)

Many people have an autism spectrum disorder (ASD).   To say this population has a “disorder” or a “disease” is misleading.   People on the autism spectrum have a different way of being.  It is like they are from a different culture, and they are poorly understood.  It is often said they do not have “Theory of Mind” – the ability to see things from other people’s perspectives, and adapt to them.  We are just as guilty of lacking an “autistic Theory of Mind”, where we, the supposedly “typical” population, do not (or can not) see things from their perspective.   But this is what we have to do if we are to help make their life less difficult than necessary.  I try to help people understand the Autistic perspective

If someone offered me a button to push that would make my son Brian a “typical” child, I would never push it.  If Brian were “typical”, he would not be Brian.  He would not be my son.  I love him for who and what he is, and Asperger Syndrome merely describes him and how he thinks and why he acts as he does.  While I will do anything to help him do well in life, I will never try to change him.  He has enriched my life in so many ways, and made me grow as a parent, a physician, and a person.  He has brought me closer to God.  He has made me stronger, less judgmental, and more compassionate.  He has made me a far better doctor.   I hope whoever is in your life with an autism spectrum disorder has done or will do the same for you.

When we talk about children with an ASD, we are using a shorthand for a particular pattern of strengths and weaknesses.  When I talk about the diagnosis with patients, I talk about having an “Asperger” type of brain.  Carol Gray and Tony Attwood wrote a nice piece called “The Discovery of Aspie”.  You can find it at:

http://www.tonyattwood.com.au/pdfs/attwood10.pdf

I tell them about how all the things they are good at are because of their “Asperger” brain.  At the end, I talk about how people with this brain have a hard time understanding “why people do what they do, why people say what they say, and they can have a hard time making new friends”.  When Brian and I had this conversation, he thought for a minute, and then said “that’s me all over”.  He was 8 when we had this conversation, and it wasn’t’ the end of it, but he was young enough to incorporate it into his self-image.  He says “I have Asperger Syndrome” in the same tone he would say “I have blue eyes” and “I have brown hair”.

 

 

 

Radio Blog Interview

Posted by Patricia Harkins in Uncategorized - (Comments Off)

Check out my interview:

http://specialchildradio.com/interview-with-pat-doctor-and-mother-of-a-son-with-aspergers

Top 10 Toilet Training Tips – for children on the autism spectrum

Posted by Patricia Harkins in Uncategorized - (2 Comments)

Toilet training can be very difficult for children on the autism spectrum.  The average age seems to be 5 to 7 years.  A lucky few train at the normal time, and some may never make it.  Brian trained for urine at 3 1/2, and was a month shy of his 5th birthday when he trained for stool.  Over the years, I have come up with some advice for toilet training children with autism spectrum disorders.

  1. Do everything related to changing diapers in the bathroom – changing and cleaning, disposing, and cleaning up.  If needed, keep clothes in the bathroom if they need to be changed.
  2. Keep a portable DVD player in the bathroom.  The only way he or she can watch their favorite DVDs is in the bathroom sitting on the toilet.  If they get up, pause the DVD, when they sit again, push play.  If you need to, let them sit on the toilet with their diaper and pants on.
  3. If there are siblings, reward them for using the toilet with something your child wants, and does not usually get.  SIbling jealousy is a very powerful motivator
  4. Work on stool before urine.  Once they are stool trained, urine is easy.  If you train for urine first, it can be years before they train for stool.
  5. Read the books about potty training kids on the autism spectrum.  Avoid techniques that are very aversive (i.e. physically forcing them to sit).
  6. Consider sensory issues.  If you use a brushing technique or massage, don’t forget the buttocks!  Many of these kids have little awareness of that part of their body.
  7. Use cloth training pants to make voiding or having a BM uncomfortable.  Disposable diapers are so comfortable, many kids feel no need to leave them behind.
  8. Sit on the toilet for about 20 minutes after dinner.  This is when they are most likely to go.  If that is not true for your child, Take data daily to see when they are likely to go.
  9. Don’t show big emotion when they are successful or not successful.  They will shut down in the face of emotional reactions.
  10. Most of all, be patient!  It will happen eventually.  Good luck!

When my son finally finished training, it was one of the most satisfying points in our journey in the autism spectrum world.

 

Climbing The Mountain

Posted by Patricia Harkins in Uncategorized - (Comments Off)

When your child receives a diagnosis of an autism spectrum disorder, it is like standing on the edge of a beach, with water lapping at your feet, and someone just ordered you to climb a 10,000 foot mountain.   You do not have a choice, and you start putting one foot in front of the other.  Gradually, the sand starts giving way to grass and soil.  Soon there is a path, and the ground is solid.  You start to meet people along the path and walk together for a short time or months at a time.  You meet new life-long friends.   Occasionally, you see a sign saying “Do not go here” or “this is hard, but it is the right way”.   One day, you remember the day on the beach, and you turn around to look back.  You realize with relief, you have climbed over a thousand feet.

I am further up that mountain.  I am at about 7000 feet.  I put some of those signs on the path and cleared some of it after others showed me the general direction.  I took some of the wrong turns that looked easy, but lead to dead ends and took precious time.  My son was diagnosed with Asperger Syndrome in 1996, when few people had heard of it, including some of the best pediatricians in Pittsburgh.  Other than the OASIS web site, there were no books, no articles, no support groups, and, it seemed, no one who knew anything about Asperger Syndrome except the people who had diagnosed my son.

With his diagnosis, I found my own “narrow, restricted interest”.  I set out to find out as much as possible about the autism spectrum.  In the process, I became expert in the needs of children with high functioning degrees of autism spectrum disorders.  This blog is one outcome of my 15 year journey.  It has some of the most important things I have learned about parenting children on the autism spectrum, as well as providing medical care and guidance to them as a developmental pediatrician.  I share them with you as part of the map to the top of the mountain.  We will all get there eventually.  We will get there faster, and have more fun, if we journey together.

For those who are still “on the beach” – parents of newly diagnosed children – looking for the path, Autism Speaks is a great place to start.  They have their 100 day plan for just after a diagnosis, getting therapies started and resources organized.  Before looking there, remember it is a guide, not marching orders.  If you don’t feel up to it yet, take a deep breath and take care of yourself.  But when you are ready, it’s a great place to start ( http://www.autismspeaks.org/).

There are 2 kits, one for Autism and one for High Functioning Autism and Asperger Syndrome.  You can download them from the page   http://www.autismspeaks.org/community/family_services/100_day_kit.php