Thread by @shannonrosa

If your child has recently been diagnosed autistic, as my son was in 2003, here's what I want you to know: Learn from me, don't be me. Here are 13 Next Steps For Parents After an Autism Diagnosis.

(Yep, this is going to be a thread.)

thinkingautismguide.com/2017/03/after-…

#neurodiversity
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When professionals first started suggesting that my son might be autistic, I reeled. I didn't know anything about autism at the time, except as disability version of a child-stealing bogeyman. When my son's diagnosis was confirmed, I was terrified. 2/

…And then I was depressed. And then I got to work on figuring out how to parent an autistic kid. And then I made a lot of mistakes. And then I rued those mistakes and tried to do better. 3/

And then I wished it hadn't taken me so damn long to figure out the best ways to support, help, advocate for, and express my love for my now-teen #autistic son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 4/

I recently came across a happy photo of my family and my parents, taken around the time my son was first diagnosed with autism. He was obviously such a cute, sweet little guy, radiating and reciprocating joy! 5/

Yet his sweetness & joy were not my focus, because I was so preoccupied by negative assumptions about #autism—& also by the urging I was getting from so many sources to “fix" him, to hurry up & get him into various therapies so he wouldn't miss any "windows of opportunity." 6/

I wish I knew then what I know now: I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what ppl assumed autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 7/

Ideally, I'd go back in time and advise (& pinch) my former self. But since that's not possible, my next best option is to share some hard-earned wisdom with parents who are just starting out, so they can avoid some of the mistakes I made, and do right by their #autistic kids. 8/

So here it is: the advice I wished I'd been told when my son was 1st diagnosed with autism.

1. Give yourself time to adjust.

Negative messages & images dominate media coverage of autism, & are the main reasons autism tends to scare the crap out of parents/parents-to-be. 9/

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You'll be parenting the same kid you were parenting before the autism diagnosis arrived. That diagnosis just helps steer you and your parenting approach in the right direction. So give yourself time to be cautious and thoughtful, and adjust your course as needed. 10/

There's no denying autism can bring challenges for your kid or family, no matter your child's personality or specific needs. But please know: most problems you meet will be from lack of understanding & accommodation from other people and society in general, not bc of autism. 11/

This is especially true when your autistic child's needs are less evident: if they don't appear to have a language delay, or if they need support with filtering overwhelming everyday environments, as in processing delays or sensory sensitivities. 12/

You also need to give yourself time to understand why those nasty and ever-present cultural messages about all autistic kids being lost in their own worlds, being isolated, lacking affection or empathy, etc., are so hurtful and mistaken, so you can push back against them. 13/

Those messages are based on misunderstanding of autistic people and how they interact with and perceive the world, and are just not true. By pushing back, you can help make the world a better place for your child right now, and also for the adult they will become.
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2. Give those around you time to adjust & keep them in the loop.

Like me, my friends & family didn't know a thing about autism when my son was first diagnosed. They also didn't know what to say, beyond platitudes. I don't blame them; we were in that ignorance boat together. 15/

…But I do wish I'd been together enough to feed them lines like, "it's okay to ask us questions, but we might not know the answers yet," and "feel free to keep inviting us over; we'll say no if it doesn't work.” 16/

3. Give yourself time to process information critically.

There is SO much bad autism info out there. But so much good info, too! And the more informed you become, the more your perspectives on and understanding of autism and parenting will change—ideally for the better. 17/

4. Give yourself time learn which orgs & people to trust about autism.

My biggest shift in understanding happened when I encountered autistic people and their writings, and learned to trust them.

As for good/questionable autism orgs, here’s a list: thinkingautismguide.com/p/position.html
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And, for the sake of all that is holy, avoid toxic parenting groups—meaning parents who at first glance appear reasonable and compassionate, but would "understand" if you hurt your autistic child. 19/

5. Give yourself time to figure out what autism means for your child.

Autistic brains & thinking processes can be very different from non-autistic brains. If you're not autistic yourself, learning to recognize & understand these differences may take time, and trial & error. 20/

What a non-autistic person might think is emotional manipulation or callousness may be logic, executive function challenges, or genuine confusion. 21/

Autistic perceptions of pain can also be different—some are hyposensitive, others hypersensitive, some are both—& some have a hard time interpreting pain signals. So be vigilant when your child appears to be injured, as they may not be able to tell you just how hurt they are. 22/

Autistic people often have anxiety, & may learn to self-soothe through stimming or creating elaborate, predictable routines. Try to understand why your child may be acting differently than their peers, instead of getting embarrassed by your child behaving differently. 23/

6. Give yourself time to figure out what communication looks like for your #autisticchild.

Everyone communicates. Even kids who don't speak. But autistic kids who can speak fluidly may not be able to communicate all their intentions. 24/

Be very careful about this, as those seemingly fluidly speaking autistic kids often have their communication needs underestimated, or their words misinterpreted—and suffer as a result. 25/

Your goal should be to find your child's optimal communication strategy and style—whether that's speaking, using a symbol-to-speech device, or typing—and not to prove to the world that there's a hidden child locked away inside your actual child right there in front of you. 26/

7. Give yourself time to figure out which supports, schools, therapies, and environments will help your child succeed.

Is an inclusive educational environment a possibility? Do you know how to differentiate between helpful and harmful therapies? The list goes on. 27/

8. Give yourself the space to be flexible about needs, & pick your battles.

You may need to adjust your rhythms to those of a kid who doesn't sleep much, whose limited diet means bringing their food along whenever you don't eat at home… 28/

…who thrives on medications you'd previously considered terrifying, who suddenly can't tolerate certain environments & needs to leave. Remind yourself that your kid isn't doing any of those things by choice, & renew your commitment to understanding their autistic needs. 29/

9. Give yourself time to find autistic role models for your child.

If your child doesn't know any other autistic kids or people like themselves, they may feel alone and isolated (or even broken, or defective). Don't let that happen if you can do anything about it. 30/

I have found good role models for my son in the blogs of autistic people, and in books about autistic people. And, of course, through hanging out with autistic people! 31/

10. Give yourself time to think about shared traits.

By this, I mean traits you might share with your #autistic child, and other family members might share with your child. 32/

Even if you don’t have enough traits for an autism diagnosis, please know: Many parents/siblings often get diagnosed after another family member's diagnosis. Plus autism in girls is different than autism in boys & is often overlooked due to gender bias in diagnostic criteria. 33/

11. Give your autistic child space to grow and change.

Not just when puberty hits (though puberty CAN scramble communication abilities, emotional stability, and coping capabilities), but in terms of autistic development being different than non-autistic development. 34/

I worry a lot about people whose families stop trying to teaching their kids skills because they're past some imaginary development window, when autistic people actually tend to continue to gain skills throughout their lifetimes, more so than non-autistic people. 35/

12. Give yourself time to figure out what your child really enjoys.

Surrender to that joy whenever possible. Don't let people frame passions in pathological terms like "special interesl." If your kid likes something, and they're not hurting anyone, let them like liking it. 36/

13. Give yourself time to plan for your child's future without you.

Most autistic kids will outlive their parents. We need plan for our kids' future as one without us in it. Denial helps no one here, & could actually really imperil your child. So start figuring this out now. 37/

I realize this is a lot (a lot!) of information to digest. Give yourself time to think it all over. If I just made you feel like you stepped into autism parenting information quicksand, come back later, or try to portion it out and think over various bits of advice as needed. 38/

Know that, even though I've been writing about parenting and autism since 2003, I honestly learn something new every day. I know I haven't learned nearly enough yet—but I also know that my son and I both benefit whenever I learn something helpful. 39/

So keep on learning about, and loving, your autistic kids, and let me know if I can ever help.

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