In April we celebrate Autism Awareness month. With the statistics rising each year (in 2007 the autism rate was 1:160 and today it is 1:50), we use this month to educate the community and try to raise money for further research.
Although autism and PWS are very different disorders there are some similarities in their presentation and we are seeing more and more kids diagnosed with both PWS and autism. Many of the successful interventions work for both:
- The need for sameness and routine
- Sensory sensitivity ( particularly tactile and auditory)
That there is an overwhelming misunderstanding of what these kids are trying to communicate is prevalent in both autism and PWS. I challenge you to take this month to step back from trying to change the behaviors that we view as socially unacceptable and instead watch how these kids respond to stress and learn from them. We try to stop behaviors such as hand flapping, foot stomping, spinning and expressing how they are feeling without a filter for volume or content wherever they may be at the moment. Instead of trying to extinguish these mannerisms let's work on trying to figure out what they are communicating. I do not subscribe to the common belief that people with autism do not know how to communicate. I believe that we do not understand what they are communicating. Repetitive behaviors are a form of communicating and self soothing and I believe that asking kids to stop these behaviors could have adverse effects. The behaviors that we need to focus on are behaviors that can cause these kids direct harm- i.e.: severe skin picking due to the high likelihood of infection; head banging and aggressive behaviors which can lead to so many problems.
So this month when we are spreading awareness let us also look at ourselves and ask what we can learn from watching some of the bravest children that I have ever met. Children who knowingly take on new challenges, eagerly meet new people all the while knowing that they will likely be misunderstood. There is a lot to be learned if we just take the time to observe and get to know these children and adults.
Manager of PWS Services
"If a child can not learn in the way we teach, we must teach in a way that the child can learn."