“What do you do for a living?”: Reactions to working with autism

One of the most interesting (and frustrating) aspects of my job, outside of actually working with the kiddos, is the reaction I get when people hear what I do. I have yet to meet anyone who hears “I work with kids with autism” or “I’m a behavior therapist for kids with autism” and doesn’t have a strong reaction of one type or another. The reactions I get usually fall into one of three categories:

1. Personal connection (“My son/daughter/nephew/niece/cousin/neighbor has autism!”)
2. Excessive praise (“That’s so wonderful! We need more people like you! You are such a special person!”)
3. Immediate negativity (“That must be so hard. Those kids are so difficult to handle. I’m surprised you’re willing to do that.”)

Reaction 1, finding out the person I’m talking to has a personal connection to autism, always makes me a bit sad, simply because I’ve found this reaction more and more common with each passing year. I don’t know why the numbers are rising, but they are, and it seems almost impossible for me to meet anyone who doesn’t know someone either first or second hand with autism. That isn’t to say I don’t enjoy meeting people who know what autism is like– I love the conversations that can stem out of this reaction, and I genuinely appreciate the people I have met through this reaction. It’s just hard at times realizing what a massive reality autism is becoming, and trying to comprehend how many people are affected (directly and indirectly).

Reaction 2, which I have been getting since I first started voicing my interest in working with kiddos with autism, has always irked me, and I struggle to put into words exactly why. The work my coworkers and I do is important; I don’t disagree. And with the rising numbers, it’s true that there do need to be more people doing what I am doing; more are needed every day. But I shy away from being held up as being some extraordinary human being simply because I enjoy working with the kids I work with. I guess part of it is the strong distinction I make between my kiddos having a disability vs. my kiddos being broken. Autism is a disability, and it makes their lives difficult. But it does NOT mean that they are broken, or less than, or defective. It does not take a superhero to enjoy spending time with the amazing kids who fill my day every workday. If anyone is a superhero, it is the parents who don’t have the choice of clocking out at 5:30 every weekday (and taking weekends completely off), who never chose to enter this field but who are their children’s #1 advocates, caretakers, educators, and everything in between.

Reaction #3 is the hardest for me to deal with. I want to rise to the defense of the kids I work with, to somehow make the person I’m talking to see how amazing they are, to let them experience the hilarious, touching, wonderful moments of life I see every day at work. But I feel as though I always fall short in my attempts, sputtering something to the effect of “No, they’re really great, I love my job, the kids are amazing…” and the person I’m taking to mentally pats me on the head and moves on, unconvinced. I usually leave these exchanges feeling frustrated at my lack of clear communication, but not very perturbed; after all, their views of what autism is and isn’t aren’t going to have a real effect on me or on the kids I work with, and hopefully they’ll have an experience in the future that will broaden their view of autism beyond “those kids are hard to deal with.” But sometimes, I get this reaction from someone who really ought to have a more holistic view of autism, and I’m left feeling useless.

Which brings us to what spurred me to write this blog post in the first place. You see, this past Monday did not go exactly as planned– instead of spending my day first in kindergarten and then hanging out with an awesome kiddo for a few hours, I spent it first at the doctor’s, and then in the ER for a few hours. Much less fun, let me tell you– I’ll take tantrums and time outs over low blood pressure and IV’s any day! (For the record, I’m doing much better now, and only missed the one day of work, so no real worries on that front.)

While I was at the doctor’s (and then at the ER), everyone I met asked what I did for a living. And without fail, every single medical professional I talked to had the same reaction: “Do you like your job? Why? Those kids are so impossible to work with. You won’t stay in that field for long– it’s too hard. Why would you want to?” Some were more outspoken in their views than others– one of my ER nurses lectured me about my career choice for a good 10 minutes. After each conversation, I was left with an ever-growing feeling of unease. What kind of care are kids with autism who need emergency medical care receiving, when the prevailing mentality seems to be that they’re nightmares who should be avoided if at all possible?

Trying to withhold judgement, I looked at the situation from the other side, from the perspective of the doctors and nurses. Assuming that all of their experience with and knowledge of autism comes from patients they see, I guess it’s logical that they would have a negative view of individuals with autism– no one is their most personable, acceptable self when in the middle of a medical emergency, and for someone with autism, the huge routine disruption of going to the hospital in and of itself is likely to trigger the worst of behaviors. Medical staff probably see kids with autism in full-blown meltdown mode, more often than not, and let’s face it– that’s not a fun place to be, for anyone involved.

I don’t know what training, if any, emergency room staff receive with regards to working with individuals with autism, but whatever it is, it clearly needs to be supplemented with something more, something positive. I wish the doctors and nurses I met who were so negative and incredulous about my job choice could come to an outing with me and the kids I work with, to see the joy on Mark’s* face as he jumps in a bounce house or hear the excitement in Alex’s* voice when he pushes the bowling ball down the lane for the first time. I feel as though experiencing kids with autism during their best moments could lend a great deal of compassion to those who work with them during their worst times; I know the memories of the good times are what make the tantrums and meltdowns bearable for me, and I think it must be nearly impossible to maintain a positive, or even impartial, view of a kid when all you see are the meltdowns and the hard, hard times.

Parents of kids with autism, what have your experiences with medical professionals been like? Have you found compassion and kind treatment, or have you faced quick judgement against your son or daughter? I’d be interested to hear!

*All names of kids I work with in this blog post, past blog posts, and future blog posts are fictional