I am asked over and over what is the hardest thing about raising a child with special needs. Undoubtedly, the biggest issue is that when you deal with a person who has an invisible disability, like autism, society can be very cruel. The world talks a big game about acceptance and respect for differences, but in the end, “square pegs cannot fit into a round hole” and society punishes them for their divergence.
Invisible disabilities are greatly misunderstood. I suppose it’s easy for society to get a handle on someone with physical limitations. Society has concrete methods in dealing with access and modifications of surroundings for those unable to use conventional methods to get around. But when society is confronted with an able bodied individual, who functions with a different brain-operating system (autism), society simply shuts down and shunts them away. Pushes them to the fringes. Out of sight out of mind.
Oh society pats itself on the back that they have done a tremendous thing allowing persons with disabilities into their schools, professions or legislates their right to live in neighborhoods. Yet no one really ever takes the time to try to understand persons with autism. They do not take the time to understand the idiosyncrasies of who they are and why they are just this little side of different. Because “different” scares people. This fear is then passed on to their children. And, society teaches children to shun those that are dissimilar. In reality, when someone is a little different, we keep him or her at arms length and turn them into that boogeyman from our childhood. The result is to malign, ignore and alienate those with invisible disabilities. Society ends up seeing only the disability, forgetting the human being before them. In the end, society’s disenfranchisement becomes an actualized form of bullying.
By the way, don’t kid yourself that this doesn’t happen in the Jewish world, because it does and more often than you may think. No matter how many Jewish Disability Awareness programs are scheduled and no matter how many times a neurotypical child does a mitzvah project for the disabled, those with invisible disabilities are generally treated as unwanted and disrespected. It has been that rare situation that inclusion meant understanding and a desire to make the boys feel a part of the Jewish world. I am glad to say that on occasion it did happen (after a huge search we luckily found a very understanding rabbi and Temple, who went out of their way to bar mitzvah them) but it was the rarity rather than the rule.
Listen I know that autism isn’t easy to understand. Since every person with an autism spectrum disorder is different from each other, there really is no handbook to look to or “Bible” to consult. Yes, many “authorities” have tried to write such tomes, but believe me when I tell you that these books only scratch the surface of the reality. No one formula really does explain every person with autism. In fact, to have a true understanding of autism you need to know the person who is living with this difference.
Having dealt with the characteristics and idiosyncrasies of autism for over 2 decades, there are still areas that are new and challenging for our family. Every step of life’s journey opens an interesting chapter for our sons, as it does for everyone in the world. It just seems that our children’s steps sometimes involved more planning and are more “in your face” reality than for the average family.
Honestly, educating yourself has to start somewhere. Autism isn’t always Rainman and it isn’t always Einstein. Most people who live with an autism spectrum disorder are simply everyday human beings trying to make their way in the world. Persons with autism just socially misstep more than others. They misunderstand human interactions more than others. They say the wrong thing, more than others. They need to be taught specifically the rules and regulations of the world constantly. It’s those little societal nuances that they can’t assimilate without help. People with autism spectrum disorders have a great capacity to function within and enjoy the world, if given the opportunity and the right tools. And yes, no matter what, they will always be just a little bit different than those who function with a neurotypical brain. Persons with autism are lawyers, doctors, engineers, computer scientists, garbagemen, chefs, plumbers, office managers, and human resource personnel. You name a profession and you will find someone who is on the autism spectrum.
It only takes a moment to try to understand that person who is a little off socially. The one you all make fun of at parties that they are not invited to. The person gossiped about at work, who wears pretty much the same style clothes everyday or talks in a funny cadence. The person who can’t look you in the eye during a conversation or is slow on the uptake when processing language. The person who would love to have friends but just doesn’t go about it in the right way. The trusting person who thinks you really do want to be friends, when in reality all you want is to use their brain for your own benefit.
Society likes to pat itself on the back for its policies of inclusion where persons with disabilities are concerned. But in truth if you do not include those with differences in your day-to-day lives you are not practicing inclusion. You are merely showing them a world into which they are not allowed to enter.
Is there an answer to this conundrum? Yes there is. And it is simple. When dealing with a person with an invisible disability such as autism, or any kind of disability for that matter, the important idea to keep in the forefront is that you are dealing first and foremost with a human being. Remember that before you is a person, who merely wants to be accepted for who they really are, idiosyncrasies and all. So before you interact negatively with someone you think may have an invisible disability, ask yourself “would I want to be treated thusly, or would I want someone to disrespect my child like this?” Answer these questions thoughtfully, and then you will do the right thing.