When Norrin was first diagnosed with autism, family and friends were quick to offer both their support and their judgement. Their concern came off as criticism. But I guess that’s just the way it feels when folks don’t know what else to say.
- He doesn’t look autistic.
- Doctors are too quick to diagnosis, he’ll grow out of it.
- My coworkers’ neighbor’s son has autism and they are like ____, ____ and _____.
- He’s not going to die from autism.
- I can’t imagine what it’s like but you just have to get over it.
Autism felt like this loss and there was so much uncertainty.
Though almost six years later the uncertainty has yet to leave us, I doubt it ever will.
Most of our friends and family have done their best to understand Norrin’s autism. I say most because over the years we’ve had to distance ourselves from negative friends and family.
Our circle of support is very small. Our circle only consists of people who get it.
And the older Norrin gets, my fear is that less people will get it. Because now, instead of doubting Norrin’s “normality,” they say:
- He has to learn.
- You need to teach him.
- He’s too old for/to ____, ____ or ____.
Autism is easy (for lack of a better word) to accept from a cute and chubby 3 year old. People are more understanding of toddlers still teetering tiptoes. Because autism at 2, 3 or 4 can be cute. Autism as a tween or teen can be seen as intolerable. Autism as an adult male can be misunderstood.
Related: This is 9. And I am scared.
I was reminded of this last week while watching Parenthood {season 5, episode 17 “Limbo”}. I have had a love/hate relationship with this show over the years. But I love the insight and story line that Hank (Ray Romano’s character) brings to Parenthood. If you haven’t seen it here’s a quick recap:
Now in the last phase of [a major photo] job, Sarah and Hank have rented a professional-quality printer. When Max shows up for an afterschool session, he insists on using the printer and pushes Sarah off the computer, losing her work, despite her and Hank’s best efforts. With the deadline looming, Sarah puts her foot down – no printing for Max until the Surfsport job is done – sending Max into a full-blown tantrum. By the time Sarah gets Max home, he’s calling her a selfish fascist. Rather than apologize to her sister-in-law, Kristina runs after Max. When Adam comes home, an angry Kristina tells Adam all about what happened; clearly, Sarah doesn’t get it, and it’s time to have a talk with her… The next day, a thoughtful Hank can sense Sarah’s still angry about Max. Sarah has found her “thing” in photography and so has Max, which for a kid with Asperger’s can be a life raft on the stormy sea of life.
So in case you don’t know, Hank has Asperger’s – he actually has just been diagnosed. But back to Sarah. Sarah is Max’ aunt – she knows that her nephew has autism but she is completely clueless on how to deal with him. She’s pissed – at Max, Hank, Kristina and Adam. And she feels like she’s owed an apology.
It was something that really struck me because I’ve been there with Norrin. Norrin is now 8 and I have seen some people in our lives lose patience with him. I’ve had to remind people that Norrin has autism and break it down for them and point blank say that Norrin is not the kid who will understand something just because you’ve told him three times. That’s not the way it works.
Family and friends want to understand #autism but sometimes they don't. Click To Tweet
Especially if they don’t live with autism. That lack of understanding can be the thing that causes the rift. The lack of understanding makes birthday parties, holidays and special occasions challenging.
I was talking to someone about a recent family issue – all families have some kind of drama don’t they? – and she said something that made so much sense.
She said, “If you’re friends with your family – that’s great. That’s a bonus. If you’re not friends with your family, then you have to just find a way to stay family.”
The same sentiment can be applied to autism.
Having to constantly educate family and friends of something that only a person who's experiencing "it" (whatever "it" is) is exhausting, especially when it comes to a diagnosis. We live this every day with our son's food allergies. You think people closest to you understand, but they really don't. Best to keep your guard up and accept that some people's level of understanding is limited. Great post, Lisa.
Thank you Ezzy 🙂 It's hard for some people to understand when they don't live with it. I think this goes for everything. But some do make an effort.
I watched that episode of "Parenthood" and was horrified at Kristina's behaviour regarding the fancy-schmancy rented printer.
Max has autism and doesn’t get that he’s not ENTITLED to use the fancy printer, nor that he cannot use the fancy printer right-this-instant. This is understandable.
Neurotypical Kristina failing to see that her SIL was being reasonable in that 1) Sarah rented the printer for work, 2) was using said printer for work and 3) kindly offered to let Max use it later was being REASONABLE. Kristina loves her son so much that she is UNABLE to see that Max is NOT entitled to use the printer at all. This is NOT understandable.
It bears repeating:
-Kristina is mad at Aunt Sarah for not letting Max use a fancy, rented printer that she needs to do her job.
-Kristina really, truly believes Max is ENTITLED to preferential access to the fancy printer – that Max’s “need” for the printer SUPERSCEDE’s Aunt Sarah’s.
Do you behave like Kristina? Was Aunt Sarah unreasonable? Do you really, truly believe Aunt Sarah owes Max an apology? Have you distanced yourself from relatives who act like Aunt Sarah?
If your answer to any of those questions is “yes”, them maybe the unreasonable family member is YOU. Aunt Sarah is trying to understand Max – Kristina does not, cannot even acknowledge Aunt Sarah’s efforts!!
Hard as it may be for you to believe, the entire world does NOT revolve around your kid on the spectrum. Understanding goes BOTH ways. You have to try too!
Why, yes, I’ve got a nephew on the spectrum and my SIL is an unreasonable, insane dictator. I’ve tried, the whole family has tried, for 5 YEARS to accommodate Nephew K’s needs (since he was diagnosed at 2). Rearranging our mom’s birthday party to a quiet restaurant that K loves, at an odd time (2.30) so it’ll be quiet and empty (no sensory overload) only for SIL to cancel at the last minute. I bought all six kids (my 2, SIL’s 4) identical Lego sets for xmas at her request to make it “easier “ for K… only to have K freak the heck out when my 5 yo wasn’t following the Lego instructions “properly” (and SIL basically badgered my kiddo into following K’s directions to try to avert his meltdown). My kids love K, I try to plan playdates he’d enjoy (open gym at his sensory gym, sensory friendly Lego Movie matinee) and SIL forgets to turn up more often than not. SIL yells if people buy K stuff not on his “Christmas registry” or “birthday registry” but can’t be bothered to send my kiddos a birthday card. SIL is 5+ years into diagnosis (K’s autism isn’t a crisis… it’s just… life) yet SIL still cannot be bothered to return a phone call, reciprocate a dinner invitation, bring a potluck dish or basically do anything to attempt to hold up her end of the social contract. I’ve more or less given up on her and K… I cannot take the over-entitlement and my kids can’t take the heartbreak of Cousin K cancelling at the last second for the 875th time. You reap what you sow – autism parents too!
While the Parenthood episode hit close to home for me and while I've had my own challenges with family – I understand both sides of the Braverman family. And I don't think either side (Sarah or Kristina) is right or addressed the situation properly–I know, it doesn't come across in the post. I'm pretty tough on Norrin as a parent and I don't by any means coddle him. That being said, I do try to have more patience and flexibility. I am constantly walking a fine line.
I am extremely grateful to have family and friends who do understand my son, our situation and continue to make an effort to include us. I am always open about what we can and cannot do. And I always try to be considerate of others when making plans so that everyone is comfortable.
However, in your situation, I am not sure if autism is the issue in your family or if it's your sister in law.
Here's the thing, Anonymous… You pass some pretty extreme judgment on your SIL. She's probably barely holding on to her sanity. Maybe functioning on 3 hours sleep more often than not. Maybe she is quite pushy in trying to avoid a meltdown… She probably wishes you would educate your children a bit more about her son's difficulties so she doesn't have to always come off as the bitch. If you are looking for a pat on the back for all your "effort" you won't get it from this autism mom.
Most parents of kids with severe autism meet the criteria to be diagnosed with PTSD… With one major exception: our trauma isn't "post" it is ongoing. Minute after minute, hour after hour, day after day, year after year…
Maybe instead of being so judgmental you should tell her it has occurred to you that you really aren't doing such a great job of supporting her. What would she like you to do??? What would she like you to stop doing?
Carrollyn- I have asked my SIL what my family could do to make it easier for their family (including K) to get together. And done it, time and again — and she bails at the last second again and again. For 5+ years.
Have I educated my kids about autism? I've certainly tried and they've definitely tried to accommodate K's needs. But my kids are little *people* too — and doing *exactly* what their cousin tells them to at all times isn't a reasonable accommodation, nor much fun for my kids.
Is SIL barely surviving on a few hours sleep? Or with PTSD? Not that I'm aware of — but even if she was, 5+ years after her kid was diagnosed, surely it is her responsibility to seek treatment. And, at a minimum, not to take out her frustration on folks who are really, truly *trying*.
"Trying" is a two-way street. Relationships are a two-way street. A kid with autism (or another disability) isn't a free pass to behave like a thoughtless jerk indefinitely.
SIL's behavior is just plain awful, as is Nephew K's, even when compared to other parents/kids with autism. Way worse. Like, three standard deviations from the mean worse. Really.
(I'm a geophysicist, my husband is a train-obsessed physics prof who volunteer teaches a train-focused social skills class at the Transport a Museum, that my train-obsessed, non-ASD kids participate in. I am personally acquainted with two dozen kids on the spectrum and their parents, many more profoundly impacted than K, who are way less high-maintenance).
Upon further reflection, I'm thinking the issue may well be my SIL's awfulness/high maintenance-ness rather than my nephew's autism.
OMG, I love, love, LOVE this post. We have struggled with many of the same issues. From the time my dad called my younger son a brat to the time my mom asked when my older son would outgrow his autism, etc. And yet, I read the post above and wanted to cry. She is totally right. Autism parents cannot demand accommodations and give nothing in return. I always host family get togethers because it is easier on my kids (and me) than watching the younger every second. Sometimes I worry that I am always making people drive, but I do try to make everyone welcome.
Thank you Julie! Being a parent is hard. Being a special needs parent is hard. Ultimately, we cannot make everyone happy and it's impossible to accommodate everyone. Family and friends – the people that love you will understand. The fact that you are hosting – you are giving something. Hosting family isn't easy, so be easy on yourself. 🙂