My daughter Sophie was a perfectly normal baby, and by 12 months of age she was hitting all of her expected developmental milestones, and starting to speak. She would surprise us sometimes, speaking in nearly complete sentences, or muttering “10, 20, 30, 40, 50,” as she’d heard on her TV shows.
Around 18 months, she began to regress. She stopped speaking independently, and would only speak to repeat words she had just heard, a type of behavior called echolalia. Soon, she wouldn’t speak at all. She wouldn’t make much eye contact, didn’t like to be hugged, and wouldn’t look when you pointed at something. These were all signs I recognized as being particular to autism, and before very long a developmental pediatrician had diagnosed her.
I don’t agree with those people who believe that vaccinations cause autism, though I certainly understand their impulse to strike out at anyone or anything they believe might have harmed their children. I was upset, I was angry, and I was looking for someone to blame.
For a very long time, I felt like autism was a thing that stole my little girl from me. That kept her from being who she was supposed to be. As if autism were a mask that, if removed, would reveal a normal, talkative, affectionate child. It took me years to understand and accept that Sophie is who she was meant to be, and that her autism, though it makes her behave in strange and sometimes frustrating ways, is as integral to who she is as her body. I had to love and appreciate the special gift I was given, and not to lament that which I felt I’d lost.
I don’t really hold out much hope for a silver bullet miracle “cure” for autism. Certainly, there will always be improving treatments and methods to alleviate the more unpleasant symptoms, but Sophie’s autism is here to stay. It will be with her the rest of her life. What she needs is not a cure, but understanding, support, and the same shot at a happy and satisfying life that any neurotypical person has.
Depending on whose studies you believe, the current birth rate for children on the autism spectrum is between 1 in 88 to 1 in 150 children. That number, for whatever genetic and/or environmental reasons, is growing. It affects boys more frequently than girls, but effects people of all races, nationalities, and financial means equally. It is something we must all face together.
People tend to think of autism as an affliction of children, but children with autism become teens, adults, and elderly people with autism. This is why it’s so important to do what we can to educate ourselves and others about what autism is, and just as importantly, what it is not. Teach the truths and dispel the myths.
Very few of us have been untouched by autism in some way, whether it’s a son or daughter, a coworker, a neighbor, or some other person close to them on the spectrum. And yet there is so little understanding about what autism is. It remains a mystery, upsetting and uncomfortable for most people to ponder.
In most states, autism is not recognized as a condition for which medical insurance is required to provide services. If a doctor believes an autistic person requires a certain type of medication or therapy, he or she would first have to diagnose a related disease or condition like OCD or ADHD. And specialists are hard to find. My daughter usually has to make appointments with her developmental pediatrician months in advance.
Finding competent, patient, and understanding teachers and caregivers is difficult, as well. Teachers of special needs children are heroes and miracle workers, and are too often underpaid and left with very little professional support.
What my daughter and all people on the spectrum need now more than anything else is a place in the world. To feel like they belong and are contributing, instead of feeling like a burden to everyone. People with autism have the same wants and needs that neurotypical people do.
Be understanding. Don’t judge a mother or father struggling to control a child having a temper tantrum in public. Don’t dismiss a person as a jerk or an asshole if Aspberger’s or other autism adjacent conditions can explain their behavior. Educate yourself. Find available resources, such as www.autism-society.org, that teach people and train educators about autism.
And give. Give your time, your effort, and your generous donations to reputable charities that provide the advocacy, research, education, and support that is so badly needed.
April is Autism Awareness Month, and in recognition, friends in the Twitter community have worked together to set up a fundraiser to benefit the Autism Society. Awards both large and small from favorite tweeters are available for making minimum donations.
Check out http://nightoftoomanytweeters.tumblr.com to see a list of prizes, then go to https://fundraise.autism-society.org/e/sireviscerate to make your donation and claim your reward! Contributors include @jonny_sun, @thenatewolf, @fro_vo, @Lazer_Cat, @TweeterRater, @DaveDittell, @Borderlinepod, @AllieGoertz, @Stellacopter, @KyleMcDowell86, @SortaBad, @Ristolable, @BuckyIsotope, @KyleLippert, @weinerdog4life, @tarashoe, @NicCageMatch, @audipenny, and many, many more.
The fundraiser will be open from April 2nd to April 15th. Do your part to show people with autism and the people who love the, that they are not alone, and enjoy the well-deserved feeling of pride that comes from doing a selfless act.