Managing Your Expectations

Every parent of a child who has autism wants their child to be the best that they can be; to achieve maximum outcome. But what does that mean? As a parent of a newly diagnosed child, should you expect or hope for “recovery?” You have been told that there is a chance that with early intervention your child may become close to indistinguishable from his or her peers. Perhaps you have heard about the results of the Lovaas study (1987) in which 47% achieved normal intellectual and educational functioning, with normal-range IQ scores and successful first grade performance in public schools compared to the control group.

Some may take that to mean that if you do ABA therapy there is a 47% chance that your child will become symptom free in 2-3 years. I would strongly discourage such thinking for at least two reasons. First, there are many factors that lead to a variety of possible outcomes. The second, and perhaps most important, is that I believe this can lead to a sort of make-it-or-break-it thinking. What if my child is not in that 47%? Does that mean that ABA therapy did not work?

Regarding the first point, I believe there are at least three general variables (with a myriad of specific variables embedded within) that determine outcome. These variables are age that intervention begins, the quality of the intervention, and the severity of the condition (physiological variables). The participants in the Lovaas study had all three variables in their favor. They started young, their symptoms were not too severe, and they had perhaps the best quality of ABA.

If we can get those outcomes, everything is great. But what if you don’t? Did ABA fail? This leads me to my second point. I don’t believe success should be defined by comparison to typically developing children. It is one thing to work towards goals that, if appropriate, could lead to your child being mainstreamed (without an aid). It is quite different however to let the goal of mainstreaming dictate and drive every behavior or allow it to control every emotion evoked by your child’s progress in therapy.

I believe the goal should be based on quality of life, independence, and happiness for the child when adulthood approaches.

In some cases, this best possible outcome is that your child functions at or very close to the level of same aged neuro-typical peers. However, there is a whole world of possibilities for those who do not achieve that outcome. Independence and functional living skills lay on a continuum.

I always ask my parents to think 5 and 10 years ahead. Look at best possible outcomes that are realistic (this is where you may need help from a behavior analyst). Total independence does not have to be the goal. Sure, it would be great for your child to live by him or herself as an adult and be totally independent, have a job, do his or her own shopping and cleaning, drive or use public transportation, have numerous quality social relationships, etc. But what if the development of the requisite skill set falls a bit short? What if your son or daughter could live alone or with a roommate but needs some help with shopping and transportation? What if the person with autism needed help at the check-out counter but could independently retrieve needed items from a list, for example? What if the person with autism could independently shower but needed help with washing her hair? What if this person got a job at the YMCA and it was determined that he could not meet quality standards for folding towels, but he could pick up towels off the floor and benches, place them in a basket, and load them into the washing machine? Would the people in these examples have a valuable skill set? Are their lives better as a result of having these partial skill sets? Space prohibits me to list all of the reasons and examples as to why I think the answer is yes. In short, all of these skills are actually useful. They help make everyone’s life a bit easier. Can you imagine the difference between having to give a person a full shower verses being able to say, “I am going to get dinner started while you take a shower. I will come in to help with your hair when you ring the bell.” That is functional. Having that skill and other skills that help toward total independence but don’t quite get you to total independence certainly can improve quality of life and open up a wider range of options for reinforcement.

If your expectations are extraordinarily too high, your programming can sabotage the most favorable outcome along with increasing stress and anxiety for all involved (the parents and the child) for a long time. I believe that it is critical to seriously analyze (with the help of professionals) your child’s complete skill set (all domains) and the child’s learning curve and determine a reasonable future course of action. The biggest danger of “false hope”, or an inflated sense of your child’s skill set, is that programming could be seriously affected. Targets well above the solid foundation of the child’s skill may be chosen. For example, there could be a focus on academics (especially reading) when the child does not have the foundational language repertoire to make use of these academics. Often students learn to read phonetically but can’t understand or react to what was read, or they may learn to answer a complex question but it is memorized (rote) and therefore is not useful. It is critical to teach skills that are commensurate with the student’s repertoire. It is always recommended to think about the foundation. Skills should be built upon a solid foundation that will support the functional use of the skill. You can hope for and plan for the best possible outcome, but take care that it doesn’t affect your judgment in a way that could lead to inadequate or ineffective program decisions. Finally, it should be the quality of life and happiness of the person with autism that is the most important. That is the bottom line.

Lovaas, O.I. (1987) Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children. Journal of Consulting and Clinical Psychology Vol. 55, No. 1, 3-9.

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