What they didn’t tell me

TW: mentions of abuse, therapy, etc.

When you are a child, they teach you to comply. Deviate from that and you will be punished, sometimes abusively so. This goes for most children, but specifically is relevant to Autistic children.

I was not diagnosed as a child, but I did know I was very different from my so-called “peers”. I had no desire to communicate with people who called me names, who hurled ableist slurs my way. It was very clear very early that I was not a neurotypical child, and it was a good eight years of testing before anyone placed a label on me, and even then it was wrong (kind of…I still have ADHD symptoms, so I cannot say that diagnosis was wholly inaccurate, but it wasn’t the only neurodivergence I had). Despite not having a label, I was told how to behave. I was told that adults were to be obeyed, not questioned. I know this is true for most children, but it was most certainly true for me, possibly more than my NT peers.

Because my NT peers figured out what they never told me. They never told me I was allowed to say no. They never told me that I maintained autonomy over myself and that I could decide things for myself. They never expected me to amount to much, so why would they tell me this? Why would they tell me that I could stand up to bullies? That I could stand up to adults, even my own parents, if they hurt me?

I was taught to be nice. To be compliant.

I still have trouble saying no.

Today, I am nearly 32 years old. A relative of one of my son’s classmates stopped me today for a ride to the school, where I was not going. I nearly missed meeting the bus, and all because I couldn’t say no. I made a few other social faux pas during that 25 minute car ride. But I’m still struck by the fact that no matter how much I yell “don’t treat Autistic adults like children”, I still see myself in a way that isn’t quite as “grown up” as my peers. This woman was likely a good 5 years younger than me, but I still saw her as an “elder”, not a “peer”. Is that internalized ableism? I don’t know. What I do know is it sucks.

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“They” were wrong

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I rarely write about my kids here, despite parenting obviously being one of the things I definitely care about.  Part of this is because that in advocating for myself as an adult autistic, I am trying to urge parents to treat their autistic children in a more accepting manner.  So it’s sort of me investing in their future by advocating for all autistics, adults and children alike.  Another part of why I don’t talk too much about my kids is that I really don’t want to ignore their right to privacy.  I do not feel that I own my children.  I feel like parenting them is a privilege and a huge responsibility, but it is not a sign of ownership.  I really feel fearful about parenting attitudes that treat kids as property and things to be controlled rather than individual human beings to be respected and loved.  I care about their privacy, and in 10 years, I do not want my choices to have a negative impact on their lives.  If an employer stumbles upon a post about any number of topics relating to autism parenting, some of which can absolutely be humiliating, I don’t want my children to feel ashamed and despise me for talking about such intimate details with strangers.  This is why you will not see many photos of my children (the above is the first one I’ve shared on this blog to date) and why I do not use their names. Some think this is overprotective.  That’s okay.  I’ve been on the internet for far too long to realize how far reaching sharing of information can be, and how easily, a person’s life can be ruined by what someone thinks is an innocuous comment.  For reference, please see the woman who was denied insurance coverage for her depression because someone saw her “looking happy” on Facebook.

But tonight, I want to share.  I want to tell you that “they” were wrong — “they” being the experts, professionals, autism “advocates” a la Autism Speaks etc.  They were wrong.

First, let me back up and explain something.  I have always knows that I am disabled.  Whether you call it a developmental disorder, learning disabled, challenged, or autism, I’ve always known there’s something that society sees in me as wrong.  I had my own sets of nevers that people talked about behind closed doors, not quite out of my earshot.  Keep in mind that when my daughter was born, I was 25 years old, a full five years before I received my own autism diagnosis.

Knowing all of that, I didn’t really understand much about child development.  Sure, I had taken care of other people’s kids for years.  I was a well respected babysitter, and I was considered responsible, probably because I adhered to the rules and expectations set before me very quickly.  But what I knew about early childhood development (defined for this particular blog entry as age three and under) was limited, contained to three parenting books I read while I was pregnant, and one college course I had taken a good 6 years prior.

Luckily, I lived near enough to my parents that they were able to say something.  They saw my daughter and noticed that hey, she’s not talking on time.  She focuses on objects and their movement far more than other kids her age, and she’s not walking (she didn’t, in fact, walk until she was 2 months shy of 2 years old). The thing is that a lot of the things that she did really didn’t seem that off to me.  I mean, we knew something was different, but we didn’t define it as “wrong”, as everyone else seemed to do.

So at 15 months, I demanded an assessment.  And let me tell you how good I am at making verbal demands of people I see as authority figures.  News flash – I’m not.  And the pediatrician passed it off as me being an “oversensitive, overprotective, worried first-time mom.”  I cried because he made me feel like I was losing my mind.  It was another three months before I visited again and asked again.  “Well, maybe it’s just her hearing.”  Oh, but there were no pediatric audiologists in the area willing to see someone so young who hadn’t had abnormal hearing tests at birth.  Then it was “Oh, she’s just stubborn.  She’ll walk when she’s ready.”

So here’s where I’m going to make my autistic readers cringe, and apologies in advance.  How did I discover that I might want to consider looking into autism as a reason for her delays and other symptoms that I didn’t even have a name for at the time? Well, I was a stay at home parent.  Who had two children under the age of 2.  I admit that during naptime, during laundry folding time, I certainly watched my share of daytime TV.  Which, in this case, meant Oprah.  Well.  I know that fellow parents of autistic children will know where I’m going with this, but guess who was on Oprah one day? That’s right.  It was Jenny McCarthy. The fact that this is how I found out about what autism was feels very shameful now.  But I didn’t have internet (except when I dragged my laptop with me to Wendy’s once a week for an hour while my brother watched my kids).  I had TV and that was it.  Jenny McCarthy shared her story, which, now who knows how much of that is accurate, knowing that her child may not actually have autism but have a similar syndrome (Jim Sinclair calls people like him “autistic cousins” and I kind of like that term, I do).  In any case, it got me searching.  On one of those trips to use Wendy’s Wifi, I spent more than I usually did just searching.  Searching for information about autism.  Unfortunately, this was a good five years ago now, and there was nowhere NEAR the same amount of information back then as there is now.  Most of the information came from parenting sites like babycenter and drsears.com and while these are good sites, sort of, they certainly don’t have any self advocates writing for them, at least as far as I know.  The information was flawed, and I admit, I had in passing heard of Autism Speaks, and knew that their information might at least have a checklist.  It did, and I saved it to my hard drive.  My daughter was 19 months old when I figured out that she was autistic.  She wasn’t formally diagnosed until 6 weeks after her third birthday.

My son’s diagnosis was far less dramatic, and involved a lot of “we don’t know if he’s enough to slap the autism label on him, so we’re just going to call him PDD-NOS which is pretty much the same”.  And it is.  It got him plenty of services up to age 4.  And then when he was 4 1/2, he received his diagnosis of autism, though his current developmental pediatrician thinks he leans more toward an Asperger’s label (which, of course, is irrelevant, considering the vanishing of the Asperger’s label in the next year).

I say all of this to say that this is how our story happened.  Now, here are some of the gems I’ve heard about my kids.

  • They’ll never be potty trained.  Wrong.  They are both fully potty trained, though they did take a bit longer than the “average” kid.  But hell, my NT nephew took longer than the “average” kid, too, and no one is using the word “never” around him.
  • Your daughter will never talk.  Wrong.  I did worry about this for a long time, because she took 5 years to speak more than a few words (“mama”, “milk”, “blankie” and “Elmo” were favorites).  I did worry, of course I did.  What no one told me, however, was that even if she could never speak verbally, she would be able to communicate.  We used PECS, an iPad, pointing and a whole bunch of other ways to communicate.  I’ve known what she wants overall since she was 2 1/2.
  • Your child will never have a normal life. Woohoo, neither do I.  Doesn’t make that life a bad one.  “Disability is part of the human experience,” a very wise person has said. It is not better or worse than living a life free from disability.  My life does not resemble my neurotypical peers’.  My kids’ lives don’t resemble their neurotypical peers’, either.
  • Your child will never have friends.  Wrong.  Unfortunately, I am far less social than my own children, and this makes organizing playdates and such a challenge. But I do give them as many chances to socialize as I can personally manage.  They are social creatures, despite what people will tell you about autistic children.  Their issues lie mostly in communication – they don’t do it well, and that causes confusion for other children.  
  • They won’t get married or have kids.  Well.  I got married, and I have kids, and I was selectively mute until I was 8, far longer than either of my children have been. I know that ability to speak is not the only defining trait of autism, of course, but it seems to be the one that people point out the most (as well as self-injury/self-harm).  In any case, this statement was uttered when my child was THREE.  Three years old and you’re telling me what her future holds for her?  {sarcasm}Well, I would like you to tell me the winning lottery ticket numbers, because you must be some sort of psychic! {/sarcasm} 

In the end, none of the above was true, or at least not true for very long.  My kids have been through minimal therapy.  I’ll link a post about ABA therapy and how we were able to successfully use as a tool to allow our child to gain skills, but not in order to make her “more neurotypical”, as seems to be the goal so very often.  My kids have both had speech and occupational therapy, have both been in special education classrooms.  My daughter this year is at a school for autistic children, and my son is at a public school in the general ed classroom with pull out for speech therapy.  I think that we’ve made the best choices for them for what their needs actually are.

You cannot tell the future.  You cannot sit there and tell me that my child is a tragedy.  You cannot sit there and tell me that my child is ill, needs to be fixed or cured.  I guarantee you that when you start seeing autistic children as people, complete people fully capable of giving consent or denying it, regardless of whether they can speak or not, your opinions on autism will change.

We are not all on the same side

I’m going to apologize ahead of time, because I know this is probably going to sound disjointed. I hope it make sense in the end.

Also, quick definition time. Allistic = not autistic. Please don’t confuse this with neurotypical/NT, which means non-neurodivergent at all. Some common neurodivergences that aren’t autism are depression, bipolar, ADHD, borderline personality disorder. If it’s in the DSM, it’s probably a neurodivergence. Allistic is specific to the autism community and is an easy way to say not autistic.

I have been an active part of the autism community online for four years if you count my time as a parent, and about a year and a half if you count my time as an autistic person. I keep hearing a few phrases that bother me, and I need to explore them here. They are the following:

“We all want the same things”, “we are on the same side”, “we all want what’s best for our kids” and “but my kid isn’t like you.”

If you say any of these phrases as a way to assert your role as a parent of an autistic person as equally important as an autistic person, well, to put it mildly, this raises my hackles.

“We all want the same things” makes me believe that you don’t listen to autistics often, even if you interact with us. Also, we do not all want the same things. Even among autistic people, there is a difference. But saying parents want the same thing as autistic people is ridiculous. Many parents want a cure. Many parents want easier ways to deal with us, to make their lives easier. Many parents want us to behave in a less autistic way. Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.

“We all want what’s best for our kids” is something I hear a lot. That is a matter of perspective, because what an allistic parent wants for their kids may not be what’s best. There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?

Another thing I’ve seen is “this infighting is terrible!” It isn’t infighting when allistics fight against autistics. While not the same form of oppression, it is like a parent of an LGBT+ person claiming they have as much of a voice in the LGBT+ community as the LGBT+ person themselves. In what other group besides developmentally disabled people is this acceptable? It is infighting when autistic people fight against each other. And it is terrible when an autistic person is telling you how they feel about x, y, z autism topic and you shut them down, and “not my child” them. It is demeaning for you to shut down the argument of an adult autistic because you assume they are “too high functioning” to count or that your child could never be like that. What you see when you interact with me online is very different from what you’d see if you spoke with me in person. In addition, I will be turning 32 early this year. I am a much different person than I was at 7, 17, and even 27. I have grown up, and I’ve adapted.

Not every person you encounter who is on the spectrum will resemble your child. This is, in part, specifically if your child is nonverbal, you will see autism through your eyes, not theirs. If your child were to encounter someone who is autistic, yes, even an adult, they may see “wow, this person is like me, and maybe because they exist and they’ve been through what I have, I might be able to do those things, too.” Despite your protestations to the contrary, they may see a bit of themselves in me. You never know.

I may not be like your child. I do not neatly fit into your low or high functioning categories, nor into many of your other stereotypes regarding autistic people (which seem to change by the hour, the more is understood about autism). Your ideas about who I am is based on your own idea of autism. I’ve had people diminish my struggles and say they didn’t think I was really autistic (because I’m not Rain Man, I guess?) until I was slamming my palms over my ears, rocking and crying because someone decided to play a maraca next to my ear. And even then, they didn’t immediately think “autism” when that happened.

I’ve never read a story about someone like me, except through the blogs of other autistic people. Even those books that address people who are like me tend to forget that LGBT+ autistics exist, that POC autistics exist, that intellectually disabled autistics exist, and so do gifted autistics. There are autistics who always look autistic, and those who can pass for allistic/NT. I fall somewhere in the middle, where people see me as odd/weird, but because their ideas about autism are skewed, they don’t think “autistic” until after I tell them, and maybe not even then.

The point is, we are all different. Assuming we must all fit some ever changing stereotype of what it is to
be considered “autistic enough” to comment on autism-related topics and if we aren’t (according to outsiders), then it’s acceptable for parents to speak over us, to tell us we don’t count is ridiculous, insulting and invalidating.