When your child get an autism diagnosis: Here are 13 next steps for parents that I WISH someone had told me at the time! A thread, drawn from the @thinkingautism archives, and in observation of #AutismAcceptanceMonth

http://www.thinkingautismguide.com/2017/03/after-autism-diagnosis-13-necessary.html

#neurodiversity

1/

After my son’s autism diagnosis, 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-adult son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 2/

I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what ignorant, misguided people insisted autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 3/

Ideally, I'd go back in time and advise (& pinch) my former self. But since that's not currently 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 my mistakes, & do right by their autistic kids. 4/

1. Give yourself time to adjust.

What most parents of newly diagnosed kids don't realize is that they'll be parenting the same kid they were parenting before the autism diagnosis arrived, & that diagnosis just helps steer you & your parenting approach in the right direction. 5/

There's no denying that autism can bring challenges for your kid or your family, no matter your child's personality or specific needs. But please know that most problems you encounter will be due to lack of understanding and accommodation, and not because of autism itself. 6/

2. Give the people around you time to adjust.

Like me, my friends and family didn't know a thing about autism when my son was first diagnosed. They also didn't know what to say to us, beyond platitudes. I don't really blame them; we were all in that ignorance boat together. 7/

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.” 8/

3. Give yourself time to process information critically.

There is so much bad autism information out there. But there's so much good info too! The more informed you become, the more your perspectives on & understanding of autism & parenting will change—ideally for the better. 9/

4. Give yourself time learn which organizations and people to trust.

My biggest shift in understanding happened when I encountered autistic people & their writings, & learned to trust them. And I am forever grateful to orgs like @autselfadvocacy
& @awnnetwork_ for guidance. 10/

While evaluating whether an autism org or person is reliable, you may need to work on your own defensiveness. If you get angry at a person's autism information or an autism org's position… 11/

…consider that you may actually be overwhelmed by the possibility that you had been getting your autism information from unreliable sources. Give yourself the space to walk away and think things over.

More guidelines for evaluating autism orgs:

http://www.thinkingautismguide.com/p/position.html 

12/

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

Autistic brains & thinking can be very different from non-autistic brains. If you're not autistic yourself, learning to recognize and understand these differences may take time, as well as trial and error. 13/

What a non-autistic person might think is emotional manipulation/callousness may be logic, EF challenges, or genuine confusion; a child may laugh when other people are in trouble, not to be callous, but out of relief that they or their loved ones aren't the distressed party. 14/

Become educated about autistic learning styles. Not all autistic kids are math prodigies. In fact, studies show that most don't have superior math skills, but rather average or below-average math skills.

#neurodiversity 15/

In addition, co-occuring learning disabilities like ADHD, dyslexia, or dyscalculia are quite common for autistic kids, and can be overlooked—or termed "laziness" if your child is perceived to have academic strengths in other areas, or if your child is a person of color. 16/

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

Everyone communicates. Even kids who don't speak. 17/

But autistic kids who can speak fluidly may not be able to communicate all their intentions. Be very careful about this, as those seemingly fluid talkers often have their communication needs underestimated, and suffer as a result. 18/

For autistic kids like my son, who don't speak or are not fluid speakers: We need to be careful to presume competence, to treat them as though they can understand everything you say. And especially, as @JustStimming writes, to treat them as *people*:

https://juststimming.wordpress.com/2014/12/21/dangerous-assumptions/ 19/

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

Is an inclusive educational environment possible? Are you unknowingly subjecting your child to therapies that would never be allowed with non-disabled kids? 20/

8. Give yourself the space to be flexible about needs, and 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…

21/

…who thrives on medications you'd previously consider scary choices, who suddenly can't tolerate certain environments & needs to leave.

Remind yourself that your child isn't doing any of those things by choice, & renew your commitment to understanding their autistic needs. 22/

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

As much as you love your child and accept your child—if you're not autistic, then you're not part of the community your child DOES belong to. So please help your child find their people. 23/

10. Give yourself time to think about shared traits.

Even if you yourself don't have enough traits for an autism diagnosis, many parents and siblings get diagnosed with autism themselves after another family member's diagnosis makes them more aware of what autism can mean. 24/

11. Give your child space to grow and change.

Not just when puberty hits (as it can really scramble communication abilities, emotional stability, and coping capabilities), but in terms of autistic development being different than non-autistic development. 25/

I worry a lot about autistic 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. 26/

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

Surrender to that joy whenever possible. Don't let people frame your kid's enthusiasms in pathological terms. If your kid likes something, and they're not hurting anyone, let them like liking it. 27/

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

For kids who do not have certain health conditions, there's no reason to think your child won't outlive you. And that's how you need to plan for their future—as one without you in it. 28/

I realize this is 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 & think over various bits of advice as needed.

xoxox

29/29