The Brutal Isolation Of Autism Parenting

The lack of understanding, sometimes from family members, is absolutely crushing.

by Justin Rosario

Being an autism parent is hard. When your friends, with kids or otherwise, find out that you have a special needs child, you often find yourself with a lot less friends. I’m not even sure they realize they’re doing it. Moms on the playground keep their distance and it’s all but impossible to have the typical conversations parents have with each other. It’s painful and isolating.

But it’s nothing compared to the sting when this lack of understanding and empathy comes, temporarily or otherwise, from family who are supposed to be there no matter what.

Where did everyone go?

Debbie’s younger brother had kids first and the grandparents were, naturally, delighted. Debbie’s parents had divorced and remarried so there were two sets of grandparents to dote on her nephew and niece and there was plenty of babysitting. In fact, Debbie’s mother sold her house so she could move closer to her brother to lend a hand.

A few years later, Deb and I had Jordan. At 18 months, he was diagnosed with Pervasive Developmental Delay (PDD), a kind of placeholder diagnosis for autism until the child is old enough to properly diagnose. Within six months, he was officially diagnosed with autism and that was that. 

In contrast to the constant presence of grandparents for Debbie’s nephew and niece, after Jordan was diagnosed, visits became increasingly infrequent. Getting someone to babysit was not easy and eventually, we stopped asking. We got the worst of both worlds: There was plenty of ongoing criticism about me being a stay-at-home dad but no one was offering to lend us a hand with our special needs son. Funny how that worked out.

It was very clear to us that Jordan’s autism had spooked his grandparents and that hurt. It’s one thing to get that from strangers on the playground. It’s another thing to get it from your friends. It’s another thing entirely to get that from your family, especially when you need them the most. Debbie needed, at the very least, emotional support and she didn’t get it. So that was not great.

Things got better. But they also got worse.

Mema and Pepa

This is Deb’s father and stepmother. They tend to be stuck in their ways and, at first, had a very hard time wrapping their head around the idea of autism. It just wasn’t something they had grown up with or experienced as adults. And since autism is “invisible”, they just didn’t understand it. To them, Jordan was just a normal, usually happy little boy. Perhaps he had some learning difficulties and he couldn’t speak but autism? What even was that?

This made things difficult when we went over to their house to visit. Part of Jordan’s autism is a lack of physical coordination and when he was small, stairs were not particularly safe for him. Like all kids, he could go up them with no problem. Watching him come back down, though, was enough to suck ten years off of your life with each step. He never tumbled down a flight, but it wasn’t for lack of trying. Letting him do that unsupervised was unthinkable but getting Mema and Pepa to put up a gate was a titanic struggle. They simply didn’t see the need because they didn’t understand why stairs were dangerous for a 3-year-old. He should be able to climb stairs easily by now, shouldn’t he?

This kind of “we don’t get it” attitude persisted until Jordan was about seven and they finally saw him have an autism meltdown. Autism meltdowns are not like when neurotypical kids start crying or throw a temper tantrum. Meltdowns are when people with autism reach their emotional limit and can no longer regulate themselves in any way whatsoever. It’s hard to describe properly but it can be very confusing and often scary for people who have never seen it. 

Mema and Pepa had never seen it.

Jordan is, by and large, a very happy child who does not want or need much. But he does love to be in the water. We had gone to the hotel where Mema and Pepa were staying with the expectation of all of us going to the hotel pool. But it was closed and Jordan, who had really been looking forward to splashing around, had one of his infrequent meltdowns in the hotel room.

Mema and Pepa sat in the corner, stunned and, frankly, a little terrified while we spent the next 15 to 20 minutes calming him down. Jordan doesn’t get violent, thank god, but his grandparents watched their normally good-natured baby boy scream and cry and wail louder than they had ever heard him before. They watched me hold him in a bear hug because the pressure helped calm him down while Debbie talked soothingly to him and kissed his head so he knew he was OK. Meanwhile, 5-year-old Anastasia stood quietly by, watching, and eating animal crackers, this not being her first rodeo.

When Jordan finally calmed down to jagged sobs instead of non-stop screaming, Anastasia asked if it was time for him to watch his tablet. This is when her grandparents realized that this was not at all an isolated incident and that maybe this autism thing was real. 

After that, their attitude towards Jordan shifted noticeably. They no longer tried to treat him like a “normal” grandson but they came to where he needed them to be. They fit into his routine, not the other way around. They talked to him the way we talk to him. They played with him the way we play with him. 

Now that Jordan is about to be 14 and is 5’11”, Pepa still tickles him and gives him zerberts and sneaks him Oreos while loudly telling him to keep it a secret from mommy and daddy. Jordan thinks this is the greatest thing of all time. Mema allows him to sit at the dining room table and draw, giving him his own space for as long as he needs it. Pepa has the distinction of being the only person on the planet that Jordan will actually ask to drive with without mommy in the car. Let me tell you, Pepa loves that. Turns out that even people very fixed in their ways can change if they want to and much joy can come from that.

Sometimes even the people you least expect it from can surprise you.

Abuelo

My father did not have to be bonked on the head with autism to take it seriously. Which, considering our previous history, was something I was not fully expecting.

But let’s rewind for a bit. I was not speaking to my father when Jordan and Anastasia were first born and I had not been speaking to him for the better part of a decade and change at that point. But after Anastasia arrived on the scene, I thought long and hard about it and decided that my issues were not their issues and they should know their grandfather. My life was better for having known my grandmothers and it always irked me that I never got to know either of my grandfathers. One died before I was born and the other died when I was a baby. So, I reached out and we started talking.

I never got the feeling my father was a fan of being called “Abuelo” which I kind of sympathized with since he was taught (abused, really) to be ashamed of being Puerto Rican by an extremely racist public education system. But I called his mother, my grandmother, “Abuela” and I like to occasionally remind my lily-white children that they are, in fact, Quarter-Ricans. 

I was somewhat concerned because Abuelo’s track record as a grandparent was…mixed. He had had two grandkids so far. The first was Cassie, my brother’s daughter and the second was Mason, my half-brother’s son. To say Abuelo’s relationship with Cassie is strained would be generous. I’m unclear what his relationship with Mason is like since A. I don’t speak to Mason’s father, Johnny and B. Mason is autistic.

You’d think with Mason being autistic, Johnny and I would have a lot to talk about but Johnny is my father’s oldest son from a previous marriage and we did not grow up together. He’s about ten years older than I am and we barely interacted when I was a kid, less so when I was an adult. I have more history with my mechanic than I do with Johnny.

As for the common bond of autism? As it so often goes with autism, Mason’s is radically different from Jordan’s. There was very little insight Johnny or his wife could provide. We spoke for a few weeks and then that petered out. It is what it is.

Regardless, at the time, I didn’t know how much experience Abuelo had had with Mason’s autism. How often had he seen him? How severe (or not) was Mason’s autism? Did Abuelo really understand our concerns and where they were coming from?

So there was a little bit of trepidation when Abuelo invited us down to Florida to visit. He had a pool and a very un-childproofed home. Anastasia was still a baby who wasn't particularly mobile but Jordan was quite mobile and pretty damn destructive when he put his mind to it. And very tall for his age. Tall enough to easily open a door and get out to an unsecure pool and drown within minutes. Oh, and did I mention that Jordan has a habit of waking up in the middle of the night and wandering off? That’s an autism thing.

You can see why we worried about coming to visit. After the experiences we had with Mema and Pepa and Grammy and Poppy (I’ll get to that shortly), we were not looking forward to a weekend at Abuelo’s. Especially with that pool that would draw Jordan like a magnet. Did I also mention that Jordan had no sense of self preservation when it came to water and not being able to swim? That’s an autism thing, too.  

But between his previous experience with Mason’s autism and just taking me at my word, Abuelo had autism-proofed the shit out of his home before we got there. The pool had a fence around it that Jordan could not get past. Every single door had a brand-new and very loud alarm. A full half of the house was cut off with gates and the half Jordan could access had the breakable stuff moved out of reach. 

Abuelo even made foods that Jordan was comfortable eating (he used to be super picky). It was probably the very first time we could relax at someone else’s home. That may sound like a small thing but I assure you, it was not. 

Abuelo really put in the effort and I’ll always be grateful for that. He had a rough time with Cassie but he’s always been good with Jordan and Anastasia, he even accepted Lila, my surrogate daughter, as his semi-surrogate granddaughter. 

Not everyone is a natural but sometimes they can overcome that with a little elbow grease.

But not everyone tries. Or wants to.

Grammy and Poppy

A few weeks ago, I relayed a brief story about Grammy, Deb’s mom, Jordan, and the circus. It was not a happy story. But very little of Jordan’s interaction with Grammy and Poppy has been happy. They work really hard to make sure of it for some reason.

Like Mema and Pepa, Grammy and Poppy (Deb’s stepfather), kind of faded into the background when Jordan was diagnosed with autism. Like Mema and Pepa, they didn’t know anything about it, understand it, and had trouble wrapping their heads around it. Unlike Mema and Pepa, Grammy and Poppy never adjusted, particularly Grammy. She still thinks that Jordan is going to “grow out of it”, as if autism is just a phase. This makes interactions difficult. But they’ve always been difficult.

Let’s step into the wayback machine again for an example. When Jordan was maybe three or four, we asked Grammy and Poppy to put child proof knobs on the doors to the rooms they didn’t want him to go into. The doors did not lock and the only way to keep Jordan out was for one of us to follow him around the house the entire time we were there to keep him from going into, say, Poppy’s man cave or Grammy’s day room. They flat-out refused this minor accommodation.

We asked again and again and again and they refused. If you’re not familiar with child-proof knobs, they’re not actual door knobs that replace the existing knobs. They’re plastic covers you can put on temporarily and take off whenever you want. We even brought some with us and they complained. Imagine spending Christmas Day somewhere but instead of being able to relax and spend time with your family, you have to chase around an inexhaustible 4-year-old for 8 hours. Does that sound like a happy holiday to you? I assure you, it is not.

It’s not like you can tell a neurotypical 4-year-old to fully behave with much success. They’re 4. An autistic 4-year-old? Nah. Good luck with that.

Finally, after months of this nonsense, we got tired of it, sat on the couch, and wouldn’t get up. We told Grammy and Poppy, “If you won’t put child-proof knobs on the doors, then whatever happens is on you. We’re not spending all day chasing him anymore.” For some insane reason, they really didn’t think anything would happen. 15 minutes later, Jordan opened the door to Poppy’s man cave, climbed up on the daybed, grabbed a very old model airplane and dismantled it.

Poppy got very angry and I blandly looked at him, “I don’t give a fuck and don’t even think about yelling at him. I told you to put the goddamn knobs on.” The next time we came, the knobs were on. Somehow, despite this object lesson in autism, it only got worse.

As Jordan got older, he stopped running around, as children do, and settled into a routine. He would find a spot, settle in, and draw and watch his tablet. Jordan likes to draw. Jordan likes to draw a lot. But Grammy wanted Jordan to do other things, things Jordan did not want to do. Play with toys. Play a board game. Watch TV. Jordan will do these things but when he wants to and only when he wants to. Mostly, he likes to draw. 

But instead of just sitting with Jordan and taking an interest in his drawing, Grammy wanted Jordan to do things she wanted to do with him. That is not how autism works. So, tension. Jordan was unhappy.

When Jordan was younger, he had difficulty with utensils. Solution? Finger foods. But Poppy didn’t like that so he insisted Jordan use a fork. For french fries. Who eats french fries with a fork? Deb and I were not there but Anastasia was. She argued with Poppy that he was making life difficult for Jordan for no reason but she was ignored. This is how we do things at Grammy and Poppy’s.

And that was the problem right there. Autism does not care about “how we do things at Grammy and Poppy’s.” Autism does what autism finds comfortable and enjoyable. That can be modified, of course, but it requires a light touch, a lot of time, and a phenomenal amount of persistence and patience. What it does not require is pronouncements from on high about “how we do things.” Pronouncements from on high make autism agitated and upset and miserable. We explained this, repeatedly, to no avail. Grammy and Poppy are set in their ways.

Unsurprisingly, Jordan does not enjoy spending time with Grammy and Poppy. Grammy tried, for a short while, to avoid spending time with Jordan. She would come up from Florida to take Anastasia out for her birthday but then “couldn’t make it” to take Jordan out. She got away with that twice and then was given the choice of either taking both of her grandchildren out for their birthdays or don’t bother coming.

Jordan didn’t necessarily understand. He never asked when Grammy was coming to take him out. He doesn’t think that way. We understood, though, and so did Anastasia, who was not amused at how her brother was being treated. 

Even so, Jordan has picked up on the general vibe and is not a fan.

Jordan understands

Jordan keeps to himself for the most part. His communication skills are extremely stunted, meaning he can ask for things but holding an extended conversation is not currently in the cards. Fortunately, he’s a very happy teen, almost always smiling and quick with a bubbly laugh.

He does not have a close relationship with Abuelo for the singular reason that he doesn’t get to spend a lot of time with him. But when he does, Jordan is just fine with his Abuelo. There’s no friction and Jordan doesn’t try to avoid him, which is as good as can be expected from autism. 

When we go up to NY to visit Mema and Pepa, Jordan is quite comfortable there. Even after three days, he doesn’t really want to leave. That’s a pretty BFD since Jordan, like most people with autism, really prefers his own home and familiar territory.

When Debbie takes Jordan to visit Grammy in Florida, though, Jordan wants to leave within a day or so. He never shows it but he remembers. Grammy and Poppy’s is not a safe space for him. Grammy and Poppy are not people who come to where he needs them to be. They do not fit into his routine. They try to force him to come to them, to fit into their routine.

There is a lot that Jordan struggles to understand but he understands where he is loved and safe and accepted. And where he is not. It’s a shame that one of those places is a place that should be a sanctuary but that is a choice they made and they’ll have to live with that failure.

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