So today’s the day we ask the world to notice–to be aware of–our kids who have autism. And not just know the definition of Autism, but know the preciousness and wildly different personalities of our kids, to understand the things they suffer, the confusion they overcome, the effort it takes to just be. Autism is that fearsomely prevalent neurological disorder that has swallowed an alarming number of our children and cast a thick fog over personality, abilities, thoughts, and relationships. So here are my 7 little tips for you to increase your awareness, to know my son and the sons and daughters everywhere who have to fight to be known because of their Autism.
1. My son has a personality…and it’s not an autistic personality. To be more clear: There is not one “Autistic personality.” While kids with Autism display many similar tendencies…they are as different as any neuro-typical group of kids. Some kids hate to be touched, throw severe tantrums when frustrated or in pain, and hurt themselves to help block out other pain or overwhelming sensory input. Mine happens to love to laugh. He’s a tease, smiles easily, and is extremely affectionate (We’re trying to help him learn who is appropriate to kiss on the lips, and who is not).
2. My son understands more than you would guess. By classic descriptions of moderate autism, Jackson “looks Autistic” and his behaviors (flapping, lack of social skills, inability to control emotions, obsessiveness about certain activities or objects) along with his lack of speech suggest that he is extremely mentally deficient. While my 4 year old can talk circles around him, keep his big brother safe, and follow much more complex directives, Jackson is still able to handle Monsters Inc. in 3D. Little brother is too scared.
3. My son is valuable and deserves to be treated like a person. I. E. Please talk to my son like he’s a person, not a dog. Vocal animation and simple language works to keep his attention, but baby talk doesn’t. And I still cringe when I catch myself or others talking over and around him like he’s unable to hear anything we’re saying. How annoying that must be.
4. My son is not the victim of in-utero rejection or ill-parenting. Thanks to days like today and unfortunately to the increase in the prevalence of autism (1 in 50 they say), it is less likely that I will get an evil glare from the lady in aisle 3 when my son flaps or squawks or screams as we veer away from the “bean aisle” and his beloved Bush’s Baked beans (the medium sized can). Are we perfect parents? Absolutely not, but…We love him and do the best we can: We hug him every day. We teach him to say bedtime prayers. We give and ask for kisses (which after 2 years of non-reciprocation, he gives more than readily). We teach him to sit at the table to eat and sometimes use a fork or spoon. We pray for him and with him every day. We teach him to share the iPad with his brothers. We tell him he’s our favorite Jackson in the whole world. We teach him how to make good choices. We snuggle him every chance he’ll give us. We teach him to use his words and his big boy voice. We play endless games of chase and tickle. We teach him to choose a different shirt every day. We teach his brothers and sisters how to love him the best, to help take care of him, and to speak up for him when he can’t speak up for himself. We do the best that we can for him, for us, and for our other kids.
5. My son is not a savant, but he has talents, interests, and unique gifts to be uncovered and encouraged. I cannot convey the extreme challenge it is to really know Jackson’s capabilities. With so few words to go on and language that slips away as quickly as it came, we fill in so many blanks based on Jackson’s expressions, obsessions, echolalia, and glances. We know he loves music, has good rhythm, and an ability to remember lines from movies and stories. It’s my mission to give him chances to try everything in the hopes that he will discover what his passion is.
6. My son needs us to be patient and flexible, but he also needs us to give a loving and firm push in the right direction. The combination of these four things in right balance is why Jackson now loves riding horses, swimming lessons, and chicken, and that combination is also why he is able to use the potty, write his name, read a few words, and put his little brother’s pacifier in his mouth when my hands are busy. It’s the reason this month we braved an indoor wave pool during Spring Break, his sister’s band recital, and the Movie Theater, knowing we could be there 5 minutes or make it through the whole event successfully…but we at least had to help him try.
7. How my son experiences autism is NOT the same as your niece or your neighbor’s daughter. Because for now, this thing called Autism Spectrum Disorder (or autistic disorder, or pervasive developmental disorder not otherwise specified: PDD-NOS, or Asperger syndrome, or Childhood Disintegrative Disorder, or Rett Syndrome) is a vast umbrella encompassing extremely different experiences, struggles, limitations, abilities, and functionality. Every single child deals with truly unique aspects of Autism. For some it’s extreme sensory sensitivities or under sensitivity, for others physical challenges, language, obsessiveness, or social skills. The combination, degree, and specifics of all of these things varies so much! Therefore the approach, the technique for how to help these succeed or how to connect with them is a big huge guessing game. Even the experts will say, “Let’s try this…” knowing full well what works for one may not work for another. And to complicate matters more, the degrees of all of the above things varies from day to day or even moment to moment. So the snazzy technique that worked miracles every day last week may fail miserably today, because today, the same lights sound like jumbo jets and feel like bee stings.
So there are my 7 little things top of mind…I know there are more. Today I ask God to help me know my son, to be aware, to SEE him more today than I did yesterday. To reach deep and touch a new place that has been hidden by this fog of autism. To see him come alive. To know what stirs him, what moves him, what brings him not just happiness, but sheer joy…to uncover a little more of that precious spirit. To find a little more Jackson beneath all of that Autism.