Lessons Learned from Autism Therapy

In my experience working with children with autism (see www.coachmike.net), I’ve come up with several lessons learned based on observations I’ve made over the years.  I list ten of them here, focusing on the management of home therapeutic programs.  I write this with the understanding that it is a monumental task to raise kids with autism and I usually only work with them for a maximum of 3-hour shifts at a time.  In other words, it’s easy for me to say.  Maybe I’m like the sportsradio caller who sits on the sidelines but criticizes the players.  Still, when I see the same mistakes being made over and over, I feel a responsibility to mention them.

1.  Parents refusing to have their children do play dates with other children. Some parents only want their children to do play dates with higher functioning kids, which is a little hypocritical because they won’t have them do play dates with lower functioning kids.  Also, some parents say, “Johnny doesn’t want friends.  He already has his brother.”  Or they are afraid to take a risk that something will go wrong.  Sometimes, it seems they are more autistic than the kids themselves based on their unwillingness to take risks and try something new.

2.  There is a lack of coordination between schools and home programs. The responsibility lies with the school, the home program, and the parents to ensure that there is enough coordination.  Without that, each side won’t know what the other is doing.  I’ve seen situations where the school doesn’t believe what the child has done at home.  I told a teacher, “But his father says he can do this.”  And the teacher replied, “I don’t believe him.”  (Use videotape to prove it to them!)  I’ve even seen a lack of coordination between certain aspects of the home program.  You wouldn’t hire two journalists to write an article about the same person without sharing and comparing notes, even if they were writing about different aspects of the person, and it’s even more important that everyone is on the same page in working with kids with autism.

3.  Therapists are shuffled in and out and there is a lack of continuity. In some cases, by the time a child is 10, he has been to several different schools, had several different home programs, and had turnover within each program so he has worked with more than 50 teachers and therapists.  It is not good for children to get attached to therapists and then have them taken away from them, because it teaches children that people are dispensable and interchangeable.  It’s also not good for the children psychologically to have people constantly shuffled in and out and taken away from them because they may develop problems in the future related to that.

4.  Giving too much power to the head of a home program. I observed one situation in which the head of the program wouldn’t let the family go on vacation when they wanted because the timing wasn’t right.  The parents should be the bosses. The organizations providing therapy are working for the parents – not the other way around.

5.  Not holding the head of home programs accountable enough.  It is tempting for parents to say, “I’m busy enough already,” and hand over the reins to the head of a home program and give them complete power.  However, parents need to periodically check up on the status of the program to see how much progress is being made and to make sure they agree with the strategies and subject matter being covered.  (Dads:  some of you have graduate degrees from Ivy League universities.  That’s nice.  Now could you possibly consider making some suggestions about your children’s programs? – you can’t even make any suggestions or any input about your child’s program?  Let me get this straight – you’re intimidated by someone half your age who has a couple years experience with kids?  You’d rather just hand over the money and not even know what is going on?)

6.  Making the child the King of the Household. A child has a disability, so parents feel sorry for him, letting him get away with bad behavior, and excusing him from acting appropriately.  Congratulations.  You are on your way to creating a monster who becomes the King of the Household.  You might as well start fitting the crown and the throne now.  On the bright side, everyone knows who rules the place.

7.  Giving up. It’s true that the early developmental years are the best for teaching children, but kids, and adults for that matter, can continue to learn throughout life.  Occasionally, parents focus so much on reducing behaviors and ensuring that kids are happy that they don’t push the kids to learn enough.  How many adults are thankful now that their parents pushed them to learn when they were younger instead of just giving into their gratifications at the time?  You wouldn’t allow your neurotypical son to say, “No! I don’t want to do math!” and get away with it, would you?

8.  Talking about the child in front of him or her. If you’re going to do this, make it positive.  Too often, parents (or teachers, therapists, or others) talk about a child in front of him as if he is not there.  “Johnny has a lot of problems learning math, and I’m afraid he will never be able to catch up.  He’s better at reading, but at math he’s hopeless.”  What if a child hears some variation of that once a week for ten years?  Also, many kids with autism have very keen hearing, so they may be taking in everything that you are saying.  We already understand that a lot of kids understand more than it appears.  Don’t have meetings about the child in front of him either because then he will get the impression that there is something wrong with him that has to be fixed.

9.  Believing your doctor is infallible. It can be dangerous to just listen to doctors without doing your own research.  The internet should be a useful tool for you to find up to date information.  Check out forums on specific topics written by parents who pool their experience rather than blindly trusting someone who sees your kid an hour and a half per year.  But instead of finding things out for themselves, as crazy as it sounds, I believe that some parents would rather do something that is accepted by the medical community that will not help their kids, rather than do something that may not necessarily be accepted that may help their kids. Author Lynn Hamilton put it this way:  “Stop seeing the doctor as the ultimate authority and to start viewing him or her as a member of their board of advisors…Ultimately, we are the ones who make the final decisions on what is best for our children.”

10.  Not putting enough attention into Emotion Coaching.  I’ve seen a few situations in which enough attention was paid to handling emotions, but the subject usually gets lost in the shuffle, which is strange because kids with autism usually are notoriously bad at identifying, understanding, and regulating emotions.  Kids should understand that it is normal to feel upset and that there are strategies they can use to calm down.  They need to understand the concept of empathy, or theory of mind.  The author and psychiatrist John Gottman says that emotional intelligence is a predictor of a child’s success later in life.  We’ve all met highly intelligent people who cannot deal successfully with other people.  I recommend Gottman’s book, “Raising an Emotionally Intelligent Child.”  Connected to this idea is the need to teach kids to say “please” and “thank you,” rather than ignore manners because other things are “more important.”  Otherwise, see #6 above.

11.  Parents crossing boundaries and getting too close to therapists and vice-versa.

I may sound critical and negative to some, but I’ve been fortunate to see most parents do an amazing job with their kids with autism.  I’m just pointing out patterns that I’ve seen many times that it would be nice not to repeat.  As I say on my website, www.coachmike.net, I don’t have my own children but sometimes you can benefit from hearing something from an observer.  Coaches are usually not as good as the actual players.  Do you think New England Patriots Coach Bill Belichick was as good as any of the 50 football players he coaches?  It doesn’t mean he can’t coach them.  As for me, I know I have the potential to be a great father, but I won’t take anything for granted and I will be the first one in a parenting course because I don’t think you can ever learn too much.

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