John has had some frank discussions with me over the past 2 years. One piece of advice I’ve never forgotten is not to use the word “maybe” with my children. I asked John why and he said because “maybe” is too indefinite. It is better to give a direct “yes” or “no” answer which is quantifiable. As I’ve thought about this more, I’d also add the words “several”, “a few” and “later” to that list. My children cope much better when the verbal terms are concrete. Better to say we’re not going to the pool today rather than saying maybe we’ll go later and having to listen to questions about it the entire day. When we parent kids with autism, we are often trying to use strategies that avoid meltdowns. Since I’ve followed John’s advice, the children cope much better with a concrete answer even if they are initially disappointed.

The triad of impairments – communication, behavior and social skills – is not a definition of autism that John likes. He created his own more positive triad for the autism spectrum which is: the need for predictability, motivation and the uneven cognitive profile (what we often call splinter skills). Predictability can be created through written or visual schedules, following routines, or letting a person know well ahead of time there will be a change of plans. If visiting a new place, try to go ahead of time, take pictures, and then organize a photo book to make the surroundings more familiar.

Motivation is important for any person in helping them to be productive. Any person is more likely to work on something if they are motivated in some way. With autism, try to find out what the special interest is and incorporate that into a schedule or plan. A person may be more willing to do less preferred tasks if they know they get some computer time later to look at ceiling fans or movie logos.

The uneven cognitive profile (splinter skills) is a point we often overlook. Just because a person can speak well or excels in a particular subject such as math does not mean they are able in all areas. A person with high functioning autism or Asperger Syndrome may appear more capable that he/she really is. Executive functioning skills - the ability to prioritize tasks, organize, see the individual steps in a routine – are often lacking in the autism population. The lack of these skills can make independent living difficult. Don’t assume a person can organize his day just because he has high intelligence. We often take away supports for people that we perceive as “able”, not realizing there are deficits in other areas that we think are easy.

Since John taught me his version of the triad, I have incorporated his thoughts into my presentations. He feels if you understand these 3 key points, you will have more success in working with this population. John recently completed a training video for teachers in the UK. He tells the viewers about his struggles in school and what supports could have helped him succeed.

John is giving presentations in the UK to groups like the Royal College of Physicians and Surgeons. His wisdom and ability to articulate how he thinks and feels are a great asset to anyone living and working with people on the autism spectrum. Spending time with John is one of the UK trip highlights for me and someone I look forward to seeing every year. I appreciate his honesty, sense of humour and everything he has taught me. I feel I have become a better parent because of him.