Helping families dealing with autism spectrum disorders
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Parents want to know how to talk to their children about the shooting in Connecticut. Some advice:

  • Turn the news off.  The intense media attention is likely to increase anxiety and make it seem as though there are many shootings, not just one.
  • Get your own emotions under control.  Parents are the rocks at the center of their children’s universe.  If they sense you are falling apart, they become even more afraid.
  • Respond briefly to questions.  Just like sex, only answer what they ask.  If they can handle more, they will ask more questions.
  • Acknowledge their feelings and validate them – “it’s normal to feel this way after such a terrible event.
  • Dwell on the fact that despite this incident, schools are among the safest places to be.  School shootings are very rare, they hardly ever happen.  But the intense media attention makes it seem like they are common.
  • Most kids will settle down within a week or two with their normal routine.  If they have persistent worries about it, they may need counseling.
  • And then there’s Mr Rogers’ advice:

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” To this day, especially in times of “disaster,” I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” Fred Rogers

 

There is an unconfirmed report that the shooter was on the autism spectrum.  Please read the following statement from the Autistic Self Advocacy Network:
“Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Most people on the autism spectrum are not violent.  They are more likely than others to become victims.  If you are worried your family member is at risk for committing violence in a copy cat event, remove all weapons from your home immediately.  If they can’t access guns, they can’t use guns.

I hope everyone recovers well from this event.  Let us all pray for the families who lost loved ones, for all the “helpers” involved, and for each other that we can celebrate the holidays as we usually do, if perhaps a bit wistfully this year.

 

 

The Holidays are again upon us.  The increased anxiety in my patients is palpable.  Schedules are disrupted, decorations are changing, and for heaven’s sake, there’s a tree in the house!  I wrote about Holiday stress last year on November 13, 2011.  For more of my thoughts, you might want to review that post.

I have some thoughts about choosing presents for kids on the spectrum.  In this electronic age, it is difficult to find toys that don’t do anything.  Remember that anything with a predictable response can become a new self stim or obsessive interest.  On a Pop up toy, when THIS button is pushed, THIS happens in response.  The games and apps on electronic devices are particularly attractive.  Kids on the spectrum seem to be born knowing how to use all things electronic.  They are like crack to their brain.  They are highly addictive.  It is important to have control.  The American Academy of Pediatrics recommends a maximum of 2 hours per day of entertaining screen time.  The sleep experts are starting to say all lit screens (including TVs) should be turned off 2 hours before bedtime.  I like to see a minimum amount of time on the devices as a given, about 30 minutes.  Then more time can be earned by time spent in less desired, but more beneficial activities or by behaviors you are encouraging.  For example, if you want your child to sit with the family at dinner, you can reward 15 minutes at the table with 15 more minutes of time.  If you are working on staying in their own bed all night, reward it with 15 extra minutes before school.  If there are siblings, reward them for staying in their bed too.  If there are no siblings, then the parents reward each other.  Jealousy is a powerful motivator!

In general, I like to see gifts that are less electric and which lead to more creative play.  Kitchen toys, dolls (without batteries), action figures, blocks, and dress up clothes are good.  Then you can incorporate them into Floortime play (see previous posts about Floortime).  I would be happy if kids on the spectrum received nothing with a battery or a plug.

I hope everyone has calm and happy holidays.  And I pray all will have a better 2013.

 

 

Autism in the News

Posted by Patricia Harkins in Uncategorized - (Comments Off)

It’s been a while since I posted.  Between family issues and catching up at work, I have found it difficult to get back to it.  THings have settled down now, and I want to share some links to interesting information.

Dr. Joshua Rotenberg has a great blog with information on pediatric neurological disorders, and he often posts information about autism.  His blog is:

http://pedzzz.blogspot.com

 

One interesting post is at

http://pedzzz.blogspot.com/2012/06/when-child-loses-milestones-consider.html

In this post, he discusses how many children who lose milestones may be having seizure activity in sleep, and if a sleep EEG is not obtained, these will be missed.  I have dozens of patients who have abnormal EEGs, some only in sleep.  When I’ve treated them with anticonvulsants, their development improved significantly in about 60 to 70%.  THis is one of the few conditions in autistic children that can be treated with medication and result in rapid changes.

Another nice site is Medical News Today.  It is at www.medicalnewstoday.com.

It is a good site for medical news in general.  If you search on autism, you will find reports on recent research findings related to autism.  One recent post reports on a trial of arbaclofen showing a decrease in cores symptoms of autism.  This is a very promising medication, and I will likely make it part of my practice when it gets FDA approval.  That post is at:

http://www.medicalnewstoday.com/articles/247872.php

Another article that caught my interest is about flu deaths in people with neurologic disorders, including autism spectrum disorders.  68% of pediatric flu deaths had an underlying neurological disorder.   I firmly believe annual flu vaccines are important, because children with disabilities can’t afford the 10 to 14 days of illness the flu can take out of their life.  Now it appears they are more susceptible to death from flu, making annual flu vaccine vital.  The article can be found at

http://pediatrics.aappublications.org/content/early/2012/08/24/peds.2011-3343.abstract

 

Why Get a Diagnosis?

Posted by Patricia Harkins in Uncategorized - (Comments Off)

 Why get a diagnosis?  What does a label do?  There are 2 reasons.  The first, and most important, is to understand where the child is coming from.  People with an autism spectrum disorder have a different point of view from “neurotypical” people.  It is like they are from another culture and they don’t know or understand our culture.  Imagination being dropped into the middle of China, you are a little nearsighted, a little hard of hearing, and you don’t understand what people are saying, and you have to get to the American Embassy in 2 days.  You don’t know if an innocent gesture or facial expression will make a friend or severely offend someone.  You would be anxious, afraid to engage anyone, and yet you had to function.  The situation is overwhelming, and you’d possibly shut down from it all.  If caregivers can’t get into their heads, they cannot help them.  It is crucial to understand the difference between someone with and ASD and someone with another point of view, such as language delay, global delay, mental health disorders (such as Bipolar DIsorder) and neurological disorders (such as Tourette Syndrome or a seizure disorder).  If you can’t get into their heads, you can’t help them.  The most important things to realize is how visual they are.  Usually their “first language” is pictures, not words.  What we think of as their “native language” is really a foreign language.  This is why visual supports are so important.  You also have to give them time to translate.  The other big thing to understand is how their sensory processing problems can lead to great anxiety and disability.

The other reason to get a diagnosis is to get services.   20 years ago, a diagnosis of autism meant there was nothing you could do.  It was “hopeless”.  It was better to get another diagnosis, with the hope of improvement.  Now, it is easier got get services with a diagnosis of ASD.    It does not mean anyone should get a diagnosis they don’t own, but only that an accurate diagnosis is crucial to getting appropriate services.

Do not be afraid to get an evaluation, and don’t let the word “autism” be too frightening.  When you know what you are dealing with, you know more about what to do.

I keep coming across information that makes me think “I should put that on my blog”.  So here are several things I’ve come across recently:

The Asperger Association of New England is a great site with lots of information.  Find it at http:www.aane.org:

http://www.aane.0rg/

Here are 2 articles about the long term negative consequences about corporal punishment (i.e., spanking):

http://contemporarypediatrics.modernmedicine.com/contpeds/article/articleDetail.jsp?id=758397

http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=781058&cid=PEDS

Writing is the bane of may Aspies’ academic life.  This site is a GREAT resource for teaching writing:

http://www.excellenceinwriting.com/

http://www.excellenceinwriting.com/

Jessica Kingsley Publishers has an incredible number of great books about just about anything you would want to know about autism and Asperger Syndrome.  Their web site is:

http://www.jkp.com

http://www.jkp.com/

I especially like Kathy Hoopmann’s books – All Cats Have Asperger Syndrome and All Dogs Have ADHD.  She has several other books that are short, sweet and easy to understand by lay people.

There was a great study out of Canada showing the benefits of a good Floortime/DIR program on kids with autism.  It shows improvement in brain function on brain scans in kids treated for a year in this program.  The CBC did a piece on it, which can be viewed at:

Finally, although this relates to ADHD, many people with ASDs also have ADHD.  This article shows how using medication leads to better learning:

http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=781063&cid=PEDS

I hope people enjoy the information.  Continue to enjoy summer!

With Independence Day, I am reminded of how limiting sensory issues can be for children with Autism Spectrum Disorders.  Many of our kids cannot tolerate heat.  A day at a park can be torture for them.  If your child is like this, liik for slushies or icees – consuming ice is the fastest way to cool down other than immersion in cold water (swimming).  Noise is another issue.  It is worth trying multiple ear plugs, noise reducing headphones, or hearing protectors to find one your child will tolerate.  We used hearing protectors to get our son back into church, restaurants, and even a professional basketball game (louder than a jet engine, I think).  SOme kids can’t tolerate long sleeves or pants, making heat exhaustion, heat stroke, and dehydration a big concern.  For some, light is a problem.  FInding shade and finding sunglasses they will tolerate can make a difference.  Food is always an issue – make sure you carry foods you know your child will eat.  Don’t be obvious about it when you walk into a restaurant.  Bring them out after you order, or just small amounts at a time.

Your child’s sensory processing problems can improve.  Left alone, it is slow improvement.  With good sensory based occupational therapy, they can improve much faster.  I consider OT just as important as speech therapy.  Not meeting your child’s sensory needs increases his anxiety and interferes with living a full life.  Sensory problems keep him from learning from life experiences other children have naturally.  They increase his difficulty making social connections and friends.  Just as fixing sleep fixes a lot, accommodating and treating sensory problems fixes a lot.  It is key to developing the independent life we want for each of our children.

Fathers and autism

Posted by Patricia Harkins in Uncategorized - (Comments Off)

Happy Father’s Day to all the great dads out there who are totally involved in their children’s lives.  Especially those who are devoted to their children with autism spectrum disorders.  When our son was diagnosed, my husband became a full time parent.  He spent hours with our son.  He “schlepped” him to and from school, therapies, playdates, birthday parties, and wherever he needed to go.  He took him shopping and on errands.  He spent hours with Floortime.  He built countless tracks for the Thomas the Tank Engine trains.  He went to countless meetings.  While not all fathers can be this involved, they can certainly be there for their autistic child in many enriching ways.

When I give a diagnosis to a family, I try to insist on both parents being present.  In many families, it is the mother who takes the child to appointments and who gets the diagnosis alone.  The father is left out of the loop, and gets all his information from the mother.  Often, the father’s reaction is denial and withdrawal.  The divorce rate in families with children with disabilities is very high, often due to the father’s withdrawal.  When the father is present at the diagnosis, it is more effective for him to hear the diagnosis from a “authority”.  Both parents need to hear that this is not a horrible diagnosis, there is hope, and many children will have a good outcome.  Fathers need to hear that optimism.  They need to hear that they have a vital role in their child’s outcome.   Men have a different approach to children.  They use different language, and they interact differently.  Children need a balance of both parents’ approaches.  When a child receives a diagnosis of an ASD, we surround them with women.  There therapist, teachers, aides, and frequently their doctors are usually women.  Like all children, these kids need men in their lives.  They need their fathers.

So Happy Father’s Day to all you special dads out there.   Your children with autism spectrum disorders need you as much or more than your other children, even if they don’t show it as much.  Go out there and be a dad!

Sleep can be a very difficult problem for many kids with Autism Spectrum Disorders (ASDs).  Something like 60% have sleep problems.  Fixing sleep fixes a lot, especial challenging behaviors

Before treating sleep, treat any medical problems that could be interfering with sleep.  If they snore, they may have enlarged adenoids and they have obstruction.  Removing the adenoids (and the tonsils at times) can lead to decreased awakenings, deeper sleep, and more time in REM sleep.  In turn, this helps brain development.  If they had GE reflux as an infant, they may still have it.  Treating reflux can lead to better sleep.  In general, the better your health, the better you sleep.

Many kids with ASD have difficulty with sleep onset, but once asleep, they sleep through the night.  Melatonin can help with this.  Most kids respond to 1 to 3 mg 30 to 60 minutes before bedtime.   Some need as much as 10 mg.  you want a vegetarian formulation, because if it comes from an animal, it can carry brain viruses.  We don’t want Mad Cow Disease to add to their problems.

Melatonin is good for sleep onset, but many kids have frequent night waking and wake early.  guafacine (Tenex) and clonidine are blood pressure medicines that also decrease hyperactivity and impulsivity in kids with ADHD.  Their use is limited because they can be sedating.  However they can be helpful for sleep as well, especially clonidine.  Trazodone is an old antidepressant that can also help with falling and staying asleep.

Another big problem with sleep is when a child will not sleep alone in their own bed.  Research shows kids sleep better when they sleep alone.  Going to sleep is a habit.  You can have good habits or bad habits.  Our surroundings when we go to sleep are out “sleep onset associations”.  When everything is “just right”, we go to sleep.  When we come up to light sleep, we expect our sleep onset associations to be there.  If they are, we go back to sleep and never know we were awake. If not, we wake all the way up to get them back.  If a parent is one of the associations, a child will wake all the way up to get them back.

This is a situation where the child needs “retraining” for sleep.  First, use melatonin to get the child going to sleep in their own bed.  The parent can sit in a chair next to the bed, but not lie down with the child.  Once the child has started falling asleep this way, then as they are just about asleep, say “I have to go to the bathroom, I’ll be right back”.  You then leave, and return in about 30 seconds.  The next night it is a minute, then 1 1/2 minutes, then 2 minutes, 3, 4 etc.  At some point you will return, and they will be asleep.  You are 90% the way there!  Usually night waking resolves because they have new sleep onset associations, and they don’t need the parent present anymore.  If night waking persists, then start rewarding everyone in the house who stayed in their own bed with something the child wants – like 3 M&Ms.  Jealousy can be a powerful motivator, especially if a sibling is getting the reward.

This approach may not work with all children, but it works often.

When sleep is good, everyones life is better.  It is important for everyone in the family to get good sleep.  It is well worth working for it.

 

 

I saw a 2-year-old in follow-up this week.  I first saw him at 18 months, and he looked very autistic.  He showed no joint attention, eye contact, or shared joy.  He was nonverbal.  He was nearly impossible to engage.  His mother reported he watched TV very intently all day.  I discussed starting speech and OT, a hearing test, and Floortime.   Since they were moving in 2 weeks, I suggested they “lose” the TV in the move.

 

When I saw the 2 year old this week, the transformation was amazing.  He used glorious eye contact and shared enjoyment.  He played peekaboo with me, and anticipated my interactions.  He used a mix of words and jargon.  He had a few little stims, and echoed a bit, but otherwise looked so much better.  We are planning to do an ADOS, but I doubt he will score on the spectrum.

I am seeing many more very young children for assessment for Autism Spectrum Disorders (ASDs).  With pediatricians screening at 18 and 24 months, they are more aware of developmental differences.  Also parents are more aware of signs of autism.  It is difficult to be certain of an ASD in children under 2.  Having the Toddler module for the ADOS 2 will help, but the ADOS is only about 80% accurate  (no test is perfect).  Also, autism is not an absolute, hence the term “spectrum”.  It unfolds over time.  I attended a conference with Amy Wetherby recently.  She showed amazing videos of young children at risk for ASDs at 14 to 17 months, and then at 2 to 3 years.  The autism was there in the early videos, but it was subtler.  By 2 to 3 it was obvious.

When I get these very young  patients who look like they have an ASD, I usually give a “provisional diagnosis”.  I tell them the child will declare himself over time.  In the meantime, nothing we would do based on that diagnosis will harm the child – Speech and occupational therapy, Floortime, educational interventions, hearing tests and possibly an EEG (especially if they regressed before 18 months).   I tell the parents I have no ego, and I’m happy to say down the road I was on the wrong track.  This seems to work with most families.  There are a few who are still in denial, and don’t accept the possibility, but as I say, over time, the child will prove himself.

Mother’s Day, and I am going to the local AA baseball game with my 2 kids.  When I was pregnant and found out I was having a boy, I thought “Oh no, I’ll have to go to baseball, football, and soccer games in the cold!”  We lived in Pittsburgh then, so you can see why I was worried.  Then I ended up with a son who had no interest or ability in sports.  Then one summer, he discovered computer versions of several sports – Backyard Baseball, Backyard Football, Backyard Soccer, and Backyard Basketball.  He could make up teams with “little kid” versions of famous sports stars – Mia Hamm, Michael Jordan, etc.  He then played “tournaments” on the computer.  When the summer was over, he knew how the games were played, all the rules, and all the scoring.  He still had no interest in sports, but when they played the games in PE, he was the perfect umpire!  He knew the rules, and applied them evenly (because he has Asperger Syndrome).  He can have a good conversation about the sports with people, and they have no idea he never watches or plays the games.

What’s the point?  One, these kids can learn anything on a computer.  Two, just signing them up for a sport usually backfires.  They can learn the game on the computer.  Then you can work on the skills needed separately.  Then they may be more able and interested in actually playing the game.  If not, they can always be the umpire or referee.  Happy Mother’s Day, and PLAY BALL!