J.P. at two and a half - one year before he was formally diagnosed with PDD-NOS, a form of Autism

J.P. - apple picking September 2011

J.P. and Clara - Winter 2011









Update - July 1, 2020





I wrote this shitty first draft several years ago. I stand by most of it to this day. Question what you're supporting, ask where the money goes, and if they're trying to "cure" Autism... move along.





What comes with years of living and learning what Autism is, how it impacted my sons' learning, how to relate to them in new ways, and finding a way to speak up for what's right.





For some people, slapping a logo on a bumper sticker is the shiny bow on the whole package of volunteerism and activism. I have nothing against a smart sticket, believe me. It's when it stops there that I take umbrance.





There is much to be said about representation and being seen that I failed to understand when I first wrote this post. Call it privilege. That's what it was. I had never been part of a group of people who were so misunderstood or "categorized." You can call that privilege, too.





Your autism logos help. Your smile instead of frown during a meltdown? Life changing. See the difference? And one was free.





Peace, ya'll.

Its Autism Awareness Month. I struggle with this stuff. A lot of these "awareness" campaigns are done for the following reasons:1. To make someone feel better/important/special about themselves2. To make a lot of money in selling ribbons and stickers and shirts that will do nothing to actually impact the lives of the people they are "aware" of3. To actually do goodUnfortunately, the great majority of the time, the first two rule the roost. I feel this way about runs, walks, telethons, and pretty much every color ribbon under the sun. Very few organizations actuallychildren or adults dealing with X (cancer, autism, deployment). All those lovely ribbons certainly make people wealthy or make the driver of the car feel like they've done their part. I'm not big on symbolism in this case. I tend to roll my eyes when I see the puzzle piece logo. Why? Here's why...My son and Aaron and I went through hell for a few years. J.P. was violently self-injurious, he had zero fear of anything and he was non-verbal for a long time. He was tossed out of a very high-end daycare because they "couldn't meet his needs." Well,I was certainly feeling that I had failed him as a mom because I just couldn't get doctors to listen to me or see him or treat him. Months on special diets yielded zero results. The internet is a wasteland of anecdotes and guilt trips for parents seeking answers.We had him in Early Intervention but as the magic age of 3, we were cut off from services. We were put on wait lists for therapy and neuro-testing that were anywhere from six months to a year long. The special education department where we were living at the time was jammed with kids and were a far cry from what he actually needed. We had nowhere to turn and the really big organizations that are supposed to be supportive were useless to us. They would send us packets of information, posters, stickers, and puzzle piece logos. I'm not sure what we were supposed to do with the bumper stickers, but every 800 phone number we dialed was a dead-end. I used most of it for kindling to be honest. At least it was useful then.Autism Speaks is a national organization that raisesof dollars every year. I have no idea where the money goes. Research I suppose. That's fine, but what about the millions of parents who just want some support or help for their child? Or a doctor's appointment to get a diagnosis that isn't six to twelve months away? Can't these groups help with this? Fund centers where kids who are cut from Early Intervention can receive ABA therapy and learning. Fund assistants who can come into our homes and help us during the transition from daycare/school to home, help out while we cook a meal or do a load of laundry or come with us to the grocery store. This is what we need. Not stickers and ribbons or 5K's or commercials. We need support a hell of a lot more than we need awareness or a national campaign that guilts people into donating their cash.The thing is, people are kind and giving and they want toAnd so, here is a small list of things that you can do that won't cost you a penny but will be worth gold to the families out there with an autistic child:1. If you see a child in a store/restaurant throwing a temper tantrum, don't assume the mom or dad is the devil and the child is demon spawn. Children with autism lack the ability to cope with so muchStores are overwhelming. Restaurants are noisy and smelly and filled with strangers and options and choices. All of these things over totally overwhelming. Think about what its like when you walk out of a dark movie theater into the direct sunlight. You squint at the brightness and wait for your eyes to adjust. Having autism is sort of like that, only your brain never adjusts to the loud/bright world outside. Give the kid a break and remember that there are no sunglasses to dim down the light for them. I have been hissed at, sneered at, pointed at and much more. Be kind. Offer a sympathetic smile.2. Educate your friends and your kids about what autism actually looks like. That tantrum in the store will piss off everyone around that child. Standing up for that mom will make you her personal hero. That happened to me one time and I could have hugged that other mom for shutting down the rude sixty-year old who suggested that my belt would do more on my son's behind than it was doing around my waist. He was3. If you know someone with a young child who is autistic, babysit for them for an afternoon, deliver a hot meal, stop over and help out. My family does this for Aaron and I so we can get out of the house. While JP is in a much, much better place now, for a while there things were pretty rough. Having an hour or two of free time without having to ask will be so very welcomed.4. Accept that the parent knows best. There are places, events and parties that we know will trigger our kids. What seems like a great time for neuro-typical kids can be an autistic child's own private hell. Guilting or cajoling us about it only makes us question our instincts. Skipping a parade sucks, feeling guilty about it only makes it worse. We really are doing our best and sometimes that means making un-popular choices. We will put our toe out when we feel the time is right. Trust us. We got this.So, there you have it. Save your dollars and put your money where your mouth is. Doing any one of these things will do more for an autistic child and his/her parents than any puzzle piece logo ever could.