Tuesday, March 3, 2015


 My son, let's call him Flynn, has always been a ball of energy, full of joy, occasionally full of pain.  He feels everything with his entire being, with highs in the clouds and lows. . . well.  The lows were bad.  Are bad.

From about 18 months we wondered if there was something a bit different about him.  I was on a trip to Colorado, visiting family, when my wife called me.  She was upset.  "Flynn bit Carlo this morning. It was bad."  I told my dad, expecting him to tell me that sometimes kids bite.  "Well, they probably won't want their son to play with him anymore" he responded.  Thanks, dad.  Very helpful.

But Flynn's problems with peers were just starting.  By two, it was evident that he was behind.  He didn't share toys, he sometimes attacked or growled at kids when they approached him, and he appeared to prefer playing alone. We took him to playgroups and parties frequently, and had to leave with him melting down . . . a lot.  Maybe most of the time? We were beyond confused, as he was meeting all his speech milestones and with adults he was loving and outgoing. His doctors assured us he was fine.  Flynn was strongly attached to his mom and I, showing extreme separation anxiety whenever one of us left. At drop off for daycare we had to pry him off of us, as though he was sure we would never return.

As first time parents, it was so hard to know what was "typical," so we compared him to his peers. The little girls in these groups were clearly more relaxed and social than Flynn, but I always watched the other boys, secretly relieved when one of them had to leave early. "See, he's like the rest of them," I thought.  And he continued to be his super-engaged, fun loving self at home.  He was so happy.  Joyful.

At three we had Flynn evaluated by an early intervention program due to his struggles at daycare, and he was given a diagnosis of developmental delay.  "What the fuck does that even mean?" I thought.  Something was going on, but that was not an answer.  He had no speech delays or intellectual delays and had always been so loving and attached to us that I scoffed at the word autism.  But by that point, it was clear he had sensory challenges.  In crowds he quickly became overwhelmed and he covered his ears when met with loud noises.  "Stop it!" he would yell when someone sang along with the music in the car. And his time at school did not get any easier.  Conflicts with peers continued. Changes to his home routine led to extreme meltdowns - hitting, biting, scratching.  At an IEP meeting, a school official suggested we seek further evaluations.  We scheduled an assessment at the local Children's hospital, six months out.

And that was how I found myself crying in a small office with my wife and a doctor, while a grad student played with my kid, keeping him oblivious to my internal struggles.

Dads don't usually admit that they're the crying type, but I'm not a "typical" dad. Like my boy, I feel all the feelings, so if something hits me hard, happy or sad, I'm probably going to cry about it. So when my son was diagnosed with autism . . . waterworks.

"What do you think this means?" asked the psychologist.

Fuck if I know, I think.  That he's broken?  "It means he has limitations."

"This boy, if things go according to my plans for him, is capable of graduating from MIT or Georgetown.  In his last evaluation he scored in the average range for intelligence. I think this seriously underestimates him. You should assume that he is capable of anything."

Holy shit.  More tears.  Tell me my boy has potential - see what happens.

Grasping for understanding, I protest, "But . . . Autism?  He loves people.  He's so high-functioning."

"He's high-functioning sometimes. Not when he's melting down and attacking you."

Point taken.

We left before Flynn was ready, so he started hitting me, as was his typical response at the time.  The doctor nodded knowingly and suggested some strategies to deal with meltdowns, for which I am grateful to this day.

For the parents who recently went through their own "D-Day" (i.e. got a diagnosis for their kids), allow me to make a few points.

  1. First, the obvious: this shit is hard to deal with. No one wants to hear their kid will have challenges. It's normal to struggle to come to grips with a diagnosis and your own feelings about it. You're not a robot - shit feels like it just changed, and not for the better. Let it out, it's okay.
  2. Your child has not changed - he or she is still an awesome kid.  Read it again.  Your child is the same and your love for them is the same.  Understand it.  Autistic kids are awesome. Especially yours. 
  3. An accurate diagnosis means that you have the tools to understand your child in a way that you never have before.  Exploit this insight to the fullest extent you can.  Autism is not a singular condition - it's an enormous spectrum.  Your job is to figure out where your kid's particular needs are and adapt therapies (which are now more available to you) to that spot.  I have friends whose kids are non-verbal, others whose kids speak primarily with scripting or echolalia.  Meanwhile, I recently had a (woefully ignorant) speech therapist tell me that Flynn's expressive language skills are too good for him to have autism. Same spectrum, different kids, different needs.  It's the same story with sensory issues - find your child's primary sensitivities and accommodate them as best you can.  
  4. Don't wallow.  People who are railing against the epidemic of autism (newsflash: wider diagnostic criteria + greater awareness = more diagnosed cases) or putting their efforts into finding a "cure" aren't spending their energy on the most important thing: connecting with their kid.  There are a million ways to connect with and appreciate an autistic kid.  If she likes scripting Spongebob, script right back at her and watch her smile. If he likes trains, get the boy to some train shows.  Find the joy and go there. 
  5. Find the people who can help you deal.  I guarantee there's a group for you online.  If you like exploring natural calming remedies with your child, there's a group for you (just keep your lavender the fuck away from me, you hippie).  If you like saying fuck a lot and drinking wine, there's a group for you (actually, fuck off, that group is mine).

Last, but not least: chill.  You can do this.  You'll be fine, but more importantly, so will your kid.

1 comment:

Três da Matina said...

Your child has not changed - he or she is still an awesome kid. Read it again. Your child is the same and your love for them is the same. Understand it. Autistic kids are awesome. Especially yours.

Love this, this is so true!