I am a person who is autistic.
What I want to say is that the hardest part of autism is the communication.
Music is helpful.
I like that I can see colors in everything.
Help us by encouraging us.
—JEREMY SICILE-KIRA
One’s first step in wisdom is to question everything—
and one’s last is to come to terms with everything.
—GEORG CHRISTOPH LICHTENBERG (1742–1799)
EMILY Perl Kingsley wrote a wonderful story in 1987 titled “Welcome to Holland” in which she described how having a child with a disability is like planning a trip to Italy, but then landing unexpectedly in Holland. The point of the story is that Holland may not be Italy, but it is still a nice place to be. Years later, Susan F. Rzucidlo wrote “Welcome to Beirut (Beginner’s Guide to Autism)” about how having a child with ASD is more like landing in Beirut with bombs dropping everywhere, with occasional ceasefires, but never knowing when the next enemy attack will begin, or where it will come from, or who the enemy really is. I sympathize.
Much has changed since this book was first published almost ten years ago. I know more about autism than I ever thought I would. Some of my best teachers have been people on the spectrum.
My son, Jeremy, often likens his story to that of Helen Keller—and mine as Anne Sullivan, her first teacher. But, to be honest, it is my son who has taught me. He has taught me patience, compassion, and what is truly important in life. Jeremy is honest, real, and lives in the moment. He has no preconceptions or judgment about people. This I find to be true of most on the spectrum. We can all learn from their honesty and realness.
As a person close to someone with ASD, your role is extremely important to him, even if he doesn’t show it. Your main purpose will be to explain or translate to him the complexities of the neurotypical world and, in turn, to translate to the neurotypical world the eccentricities of the person with ASD. You will be a sort of United Nations interpreter; a most important role to fill. Just as a stranger in a strange land needs to have customs explained to him, so will the individual with ASD need explanations. And as the adopted country needs to have some understanding of the foreigner who has landed in their midst, so will the neurotypicals of our society need to learn from you about people with ASD so as to be more accepting and tolerant of differences.
Parents need to do all they can to help their children, and as early as they can. Some will be “recovered” and many will not be. The focus should be to teach them how to make sense of the world, and give them the tools to function in it so that they can grow up to live independent, fulfilling lives. Helping your child learn by focusing on his area of strength or passion can make life enjoyable for him and may pave the way for connecting with other people and possibly employment in future years.
As a parent you may have knowledge, but you will not always have control. You must learn to recognize that which you can change, and that which you cannot. And this advice holds true whether you are thinking about a behavior your child has or a policy your school district is sticking to. In some instances, the only thing you may be able to change is your attitude.
Professionals should recognize that autism includes the family. You may spend a few hours a day or month with this person, but for his loved ones, it is 24/7. You need to respect the fact that you may be an expert in your field, but while the person is growing up at home, the parent is still the expert on their child. Together you offer strong support and assistance to the person with autism.
Friends and extended family can lend support by learning about ASD, and being open-minded. Do not judge the person with ASD or the caregivers; realize that they may all be a bit overloaded. Continue to extend invitations and keep the lines of communication open. If you can help in any way, offer to do so. The offer will be appreciated even if it is not taken up.
The general public can be instrumental in how a person with ASD or the caregivers feel in the community. Acceptance and a nonjudgmental attitude toward those who act differently will do wonders to ease the stress. We are all part of the same community, and it does take a village to raise a child and make the place we live into a neighborhood.
Some parents say that if it weren’t for autism, they wouldn’t have met the wonderful people they have come to know, that autism has given them a raison d’être. As for me, I tend to believe that even without autism in my life, I would have met some wonderful people and become committed to some worthy cause. This is not to speak disparagingly of all the fantastic autism-related friends my family has made over the years. It is more a comment about the fact that I could do fine without having to deal with the individuals who don’t “get it” or all the added stress of administrative paperwork, phone calls, and resource-searching one needs to do in order to get any assistance.
What is certain, however, is that I have learned much about what is truly essential in life. I have learned how fortunate I am that my body and mind work in sync, and how much inner strength I possess. I have also learned literally to stop and smell the roses and to take pleasure in the simple moments of daily living between the bombs falling. I have learned that heightened senses can bring both pain and pleasure, and that passing the time of day by staring at dust particles in the sunlight, feeling the sand sift through your fingers, or your body floating weightless in a pool, doesn’t seem so crazy after all. In fact, it’s very relaxing. Try it sometime.