Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.
So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.
The first thing
 you need to do isn't find therapists. It isn't commiserate with other 
parents. It isn't become an AAC expert (though all of these things have 
their place!). It's something not in the autism introduction packet: you
 need to connect on a human level with adults like your child. You need 
to go make some Autistic friends.
I don't mean a 
mentoring relationship, though those are extremely important and I am a 
big fan of mentoring (and mentoring your child & being friends with 
you are not mutually exclusive). I definitely don't mean "translate my 
child to me" (which is not a friend thing particularly). I mean find 
local Autistic adults with whom you have common interests and connect as
 equal human adult people.
There are a whole lot of reasons this is the best thing you can do for your child:
First,
 and possibly most importantly but mileage varies: your child is 
noticing things. If you go through a mourning phase, or a difficult 
adjustment phase, your child will notice and possibly blame himself. 
Your child may not have the vocabulary for it, but at some point he will
 figure out that he isn't the son you planned for and dreamed of, and he
 might blame himself for that. We figure it out when we're a 
disappointment, even if you do your best to hide that you're having a 
hard time. Many Autistic children get in our heads, accurately or not, 
that our parents only tolerate us because they're stuck with us.
Your
 child needs to see you choosing to be around people whose minds work 
like his. It's much harder to think your parents hate you and hate your 
brain when they seek out the company of people who think like you. 
Seeing the adults who are dearest to you--and like all children, 
Autistic youth default to loving their parents--seeing them find someone
 who reminds you of you? That's supremely important. Do not 
underestimate the effect this can have, just knowing that your parents 
would choose to be around you even if they weren't "stuck" with you.
Another
 reason: many disabled children never meet an adult with their 
disability. You might be surprised, and a bit saddened, at the 
conclusions we come to. Some folks come to the vague idea that we'll 
outgrow our disabilities (and when there's no sign of that, we're 
reminded that we're disappointing, because you can bet we're getting 
that message from someone in our lives). Or, I have friends who 
concluded that their disabilities were fatal. That's a recipe for severe
 anxiety, thinking that you're dying but you feel fine and no one has 
felt the need to talk to you about your inevitable demise. We need 
adults like us; this anxiety is completely unnecessary. 
Your
 child also needs role models. She may not be able to fill your shoes, 
or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in
 her immediate sphere. But my shoes may fit, or those of another adult 
Autistic. All children need people in their lives who they can 
realistically emulate, & Autistic children are no different. I was 
pretty young when I knew the adult-woman things being modeled for me 
were just not going to happen ever--and alternatives were never 
presented. I was surrounded by folks who were similar to each other and 
not much at all like me. This is stressful. Making your own make is 
hard, and it's harder when everything you do is wrong (the premise of 
somewhere between many and most autism therapies, and a message also 
sent by peers, random strangers in the store, other adults, etc). Once 
again, anxiety. It's easier to believe you aren't Doing It Wrong when 
you know happy adults who took similar trails. Knowing options for the 
future? Seeing unconventional but fulfilling adulthoods? So important.
If
 you have culturally connected Autistic friends, your child also will 
have a head start on a connection to the community. As he grows older, 
he will have a life apart from your family. This is a good thing and an 
essential part of growing up. The Autistic community is his birthright. 
We as a general rule (can't speak for everyone) welcome friendly 
parents, but your child is one of us. It's wonderful but also 
overwhelming and scary to discover a place where you're "normal" when 
you've never been, especially all alone. Even good overwhelm is 
unpleasant when it gets too big. You can make this less of a shock by 
having Autistic friends. "I'm not alone" doesn't have to be an adulthood
 revelation; it can be a given. Your child deserves to grow up knowing 
that he isn't alone, that there's a whole community that will 
embrace him because he's one of ours. The gift of growing up with this 
knowledge? I cannot imagine it having anything but good effects.
Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends.
 We might provide insight to things about your kid that you never 
thought of, completely on accident. Your way of looking at the world may
 accidentally clarify things for us, too. But in my experience, Autistic
 people are the funniest people on earth, and the most dedicated to 
making sense and to fixing things that are not right (admittedly, my 
sample might be skewed, but I also have a very large sample size). 
That's how the people I hang out with roll. Making friends with us isn't
 just good for your child. We're good for you, too, and you can be good 
for us. A true friendship is a mutually beneficial relationship. We have
 a lot to offer each other.
So breathe, put down the 
pamphlets about all the different therapies, breathe again, and look in 
your networks for some Autistic connection. It'll make your life, your 
child's life, and some local Autistic's life, better.
Crossposted from Radical Neurodivergence Speaking Radical Neurodivergence Speaking
 
Yes! But. Stupid question. How do I find them? I'm in Melbourne, Australia.
ReplyDeleteKeep your eyes and ears open. You probably already know them, or know someone who does. Be consistently respectful and friendly to the people who others denigrate as "awkward" or "odd." Treat those people like real adult friends, not novelties or awkward people to be tolerated....and before too long you'll probably have autistic friends. (Not all of those people are autistic, but some probably are.) There are a lot of solid reasons why autistic adults don't tend to be open about their spectrum residence...fear of being patronized or condescended to, fear of being seen as less of a real adult, fear of job loss or abuse by medical and mental health professionals, having to deal with the ways people tend to react when they find out...so this will take time.
DeleteAlso find out whether your city or geographic area has something like an ASAN or GRASP chapter, or whether local colleges/universities have student groups that hold public events/protests/info tables that you could drop by.
Thank you for this -- it couldn't be more timely for me.
ReplyDelete