Top 10 mistakes, lessons learned from therapy programs for children with autism spectrum disorders

Parents of children with autism, along with the children and adults who have autism themselves, are the real heroes when it comes to improving the lives of people on the autism spectrum. Home therapists, teachers and other professionals also contribute greatly to the quality of life of people with autism.

It is a monumental undertaking to raise children with autism and to make decisions regarding their care and education. Recognizing that fact, below are ten common mistakes made, or lessons learned, in the management of home therapeutic programs for children with autism.

Parents refusing to have their children do play dates with other children. Play dates for children with autism can enhance social skills, emotional awareness, and learning. However, some parents only want their children to participate in play dates with higher functioning children, which is a little hypocritical because some of those same parents won’t have their children 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. Parents worry when children have problems with trying new things that are out of their comfort zone or usual routine, but sometimes it’s the parents themselves who are not willing to take risks and try new ideas. The best way to learn social skills is through actual practice. For young children, Floortime is one effective method of play therapy that can build engagement and interaction. The Interdisciplinary Council on Developmental and Learning Disorders in Bethesda, Maryland describes the Floortime approach.
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 adequate coordination exists. Without that, each side won’t know what the other is doing. In some cases the school doesn’t believe what the child has done at home. A home therapist once told a teacher, “But his father says he can do this.” The teacher replied, “I don’t believe him.” (Use videotape and documentation to prove it to them!) Sometimes there is even 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. You wouldn’t segregate people in an office who are working on the same task. It’s even more important that everyone is on the same page in working with kids with autism.
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 multiple schools, had several different home programs, and experienced significant 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 trust, attachment, or abandonment issues. Children with autism should be treated with respect and their feelings should not be ignored, regardless of how advanced their verbal communication skills are.
Giving too much power to the head of a home program. In one situation the head of a program wouldn’t let a 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.
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 him or her autonomy. 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. You would demand accountability at your job, so show the same respect to your children.
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. They give him what he wants to avoid meltdowns. 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.
Giving up. It’s true that the early developmental years are the best for teaching children, but children, and adults for that matter, can continue to learn throughout life. Occasionally, parents focus so much on reducing behaviors and ensuring that kids are gratified 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 wants 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?
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 in reading, but in math he’s hopeless. He can’t do this and he can’t do that.” How will a child be affected if he or she hears some variation of that daily or even once a week for 20 years? Also, many kids with autism have very keen hearing and excellent recall of past events or memories, so they may be taking in and remembering everything that you are saying. We already understand that a lot of kids comprehend more than it appears that they do. Use that to their advantage by constantly encouraging the child. 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 needs to be fixed. Older children and adults with autism who have improved their communication skills say they did not like being talked about as if they were not there.
Not putting enough attention into Emotion Coaching. The subject usually gets lost in the shuffle, which is strange because kids with autism are often notoriously bad at identifying, understanding, and regulating emotions. Understanding emotions is crucial to learning. Children 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 in “Raising an Emotionally Intelligent Child” 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. Connected to this idea is the need to teach kids to say “please” and “thank you” meaningfully rather than ignoring manners because other things are “more important.” Otherwise, see #6 above.
Ignoring sports, exercise, and motor skill development. Sports and recreation should be an integral part of a home therapy program. Improvements in coordination, balance, and motor skills often go hand in hand with academic and social gains. Sports can also be more effective for kids with developmental disabilities when they are combined with academics and social skills. Children can work on a half hour of sports followed by a half hour of schoolwork, followed by a half hour of social skills. Too often, however, sports and motor skills are seen as separate from the rest of a home therapy program and are the first thing to be cut in favor of more hours for a an Applied Behavioral Analysis (ABA) program. Rather than having specialists for sports, academics and social skills, if the same therapists can do a combination, integrating different teaching areas can help children better generalize skills into a natural environment.