It is April again. For the past eight years, there has been a proclaimed month of 'autism awareness.' There is a specific day of awareness on April 2. There are organizations who have cute phrases about what we should do to honor the day, how we can help, what we should understand. There are countless fundraisers and groups asking for focus on something that is now affecting 1 in 68 people and the millions of families that love them.
What there is not, is a consensus of what any of this means. As wide as the autism spectrum is, the beliefs about what autism awareness means are just as wide - and divisive. Some of the most influential and well-funded groups have historically taken the view that being aware means understanding how devastating and painful autism is for those on the spectrum and their families. They see awareness as a catalyst to fundraising to find a 'cure.' If given a choice, removing autism from our society is as critical as removing cancer. Like a disease, eradication is the aim.
For others, however, the disease model view is dangerous, unnecessary, and maddening. People with Autism Spectrum Disorders (ASD) have challenges, yes. They are not neurotypical (which means what, exactly?) and are often disabled by some of the symptoms associated with ASD. But awareness means something completely different.
It means understanding that having challenges does not make them less than whole human beings, capable of every emotion and deserving of every opportunity as those not on the spectrum. It means acceptance of the different ways of thinking and expressing themselves and looking at those differences as gifts that can be utilized to improve the lives of both the individual and society. Autism acceptance means embracing and empowering those who are square pegs who do not fit into a round whole and believing that is not a bad thing or something that should be changed.
Adults and children with ASD face many obstacles as a result of being wired differently. There are social and communication challenges, to varying degrees. Sensory processing issues and restrictive or repetitive behaviors are common. There is no denying that many of these challenges benefit from intervention and therapy, and many organizations are dedicated to fundraising to help families with limited access to assistance because of the high cost of services. Many lives are improved from occupational and physical therapy, social skills education, and speech-language therapy, and issues that have been debilitating can be improved to the point of manageable.
Rather than focusing solely on the disabling aspects of ASD, the 1 in 68 also benefit from being viewed as whole persons, with hopes, dreams, interests, desires, opinions and a desire to belong. When those with ASD are understood less as a problem to be pitied and more as people who are simply different yet equally valuable, we move much further toward true autism awareness and acceptance.