When Isla was first diagnosed with autism, I took comfort in the fact that she was on the high functioning end of the spectrum. I was told that kids that fall in this range often go on to lead successful, independent lives and that they often responded really well to therapy. So far, that has been true. What they didn’t tell me was that we would now be living in a different world that few would understand.
You have to decide if and how you tell everyone.
I’ve really struggled with this one. I feel like I have an obligation to help create autism awareness, but I also want to give our family privacy and the ability to disclose Isla’s disability as we see fit. I cringe at the thought of telling every single person we meet. I hate to give her the label, but I also want people to cut her (and me) some slack, but not so much slack that she’s coddled or treated differently. It’s a fine line to walk because we set the precedent for when she eventually decides how she tells the world, but I also want to create an environment where she’s surrounded by people who make her feel comfortable being herself.
You don’t fit in anywhere. You aren’t autistic enough for the autistic crowd, but you’re too far removed for the neurotypical crowd.
I really didn’t feel this until she was in an autism specific class. The other parents seemed to question her speech (she talks a lot, but it shouldn’t ever be confused with being conversational, which we’re still working on), her motor skills, just about everything. You wouldn’t notice Isla’s autism right away, and for that I felt judged. As if they were really asking, “Why is she here?”
Your struggles are invisible.
The challenges aren’t always outwardly seen, therefore not easily understood and often ridiculed. The little things I do to ensure consistency and predictability for her are seen as overbearing and unnecessary or even permissive because she seems fine- until she’s not. Little things that are no big deal for most kids can be meltdown inducing experiences for Isla, and once we’re at that point, there’s usually no coming back. And no, stricter discipline isn’t going to help. A swat on the butt won’t straighten her out and I assure you we have plenty of rules and expectations.
Autism will strain all your relationships. Even ones that have nothing to do with autism.
Listening to my friends’ parenting struggles gets increasingly harder as Isla’s development stalls. I want to cheer their successes, but it’s hard to ignore that little voice that wonders if I’ll get to celebrate the same things. It’s impossible to have empathy as a friend vents about her tribulations (even though they’re entirely valid and I complain about the same things with my typically developing son). The one that always hurts the most is when they complain about their kids talking too much. Isla makes noise constantly, some distinguishable as words and some not, but to have the opportunity for her to know exactly what she’s thinking or needing at any moment and to convey that to me 100% of the time would make such a dramatic difference in our days, it literally brings me to tears just to think of it. I don’t want to be a one upper, but when I spend my days working on things that they never even consciously think about teaching their child it gets really hard to stop the “Yeah, you think that is hard?!” type thoughts from rolling off your tongue. I know people don’t do it intentionally, but know your audience. I’ll be honest and say I’ve pulled back from a few friendships. It just becomes too hard when your situation isn’t fully understood or attempted to be understood and to listen to one more problem that you would trade anything to have.
I won’t even get started on what autism can do to a marriage. At the end of the day only my husband and I really know how difficult it is and that is a heavy thing to put on a marriage, not to mention isolating.
Comparisons are impossible to avoid.
Play dates, birthday parties, parks, anywhere you find neurotypical peers is no longer a chance to socialize. It’s a front row seat to The Comparison Show. There it is, front and center. All the ways my child is so similar, yet so obviously different. Can you see how this could put a strain on a friendship?
Anxiety takes on a whole new meaning.
You live life knowing the next meltdown you cannot fend off or battle that must be fought is always looming around the corner. You now spend the better part of every day doing your best to stay three steps ahead to fend it off, which works. Sometimes.
Isla’s day is like playing Jenga. Every time she uses a coping skill to navigate an experience it’s like taking a block from the bottom of the tower and precariously placing it on top. As the day goes on, the tower becomes increasingly unsteady. Sometimes I get a whole day of moving easy blocks and no one bumps the table. Other days, every block requires the greatest degree of finesse, gentle nudging and I hold my breath with every move. Not to mention, that depending on the day, we don’t always start out with a sturdy, in tact tower. I spend all day worrying what event is going to be the one that makes everything come crumbling down.
My job as her mother is to make sure I keep the tower from falling over, and you probably won’t see that because if I’m doing my job, then we don’t get to that point. Playing this game all day long is taxing, mentally and physically and it’s hard to understand because from an outsider’s perspective, you don’t even know I’m doing it. It becomes harder to relate because I start to resent that no one truly understands my daily life.
Everyone has an opinion, cure or cause.
Listen, I know they’re all well intentioned, but, please, just stop. I encourage your questions to gain understanding, but if one more person asks me if I’ve tried essential oils, I’m going to freak out. I’m not interested in your theory that my epidural caused this and I really don’t want to hear about what worked for your hairdresser’s sister’s nephew with autism. Just because my daughter has autism does not mean that I want to talk all things autism all the time. I have a vested interest in it now, sure, but the extent of my interest doesn’t go beyond advocating for my daughter and her needs. I don’t have the capacity for cures, causes and every piece of breaking research, so you don’t have to forward or tag me in every autism related thing you see. I know it’s probably your way of being supportive, but the best way to support us is to educate yourself and spread awareness.
You don’t get the option to be laissez faire.
The “ehh, she’ll be fine!” approach just doesn’t work. The behaviors Isla displays aren’t something she’ll grow out of or fix on her own in time. They need to be strategically addressed, consistently, to keep her development on track. Waiting to see if she outgrows something could end up wasting precious time and make it a harder habit to break down the road.
I have to track development and check off milestones not only for Isla, but for Nolan too to see if he’s displaying signs of autism as well.
The paperwork. OMG, the paperwork.
Every time we see a new doctor, participate in a new research study, meet with a new teacher or therapist, I fill out a checklist. Think like what you would fill out for a well child visit, but long and detailed enough to require an entire ream of paper. Each checklist asks the same thing in a different way, because God forbid two organizations use the same form or share information, and requires concrete examples of how she does each task. I’m put on the spot quite often with these types of questions and the pressure to answer thoroughly and precisely is immense, otherwise they will take what you say and twist what you say just so to the point that little things that aren’t a problem are suddenly big problems. This has lead me to tracking development and mentally checking off milestones not only for Isla, but for Nolan too to see if he’s displaying signs of autism as well.
You feel guilty for complaining, but it’s impossible to avoid.
It’s hard to operate in this gray area. Because autism is such a spectrum, it’s hard to find someone to relate to because each experience is so unique. Then to think that other people have it even harder than you do? Who are you to complain? I should feel lucky to have these problems! But then that makes me mad because this is still so effing hard that should it matter that it could be worse? Are my struggles invalid because they aren’t the worst case scenario? Do you see where this is going?
This is my life. It’s not all bad and I don’t share this for pity, but to bridge the gap of understanding. Some days it’s easier than others and none of these things bother me. Other days they all bother me simultaneously and I resent anyone with a “normal” child and how easy they have it and wonder why I have it so hard, which of course, is shortly followed by feeling guilty. The funny (/not funny) part is, Isla doesn’t care how I feel because she can’t read the social cues of my emotions, so wallowing in all of this doesn’t even do much good. Life goes on and all I can do is hope that what I’m doing is enough to make a difference for her.