April, Autism, Awareness, and Acceptance

Unfortunately, the autism community is polarized (and therefore paralyzed) on many issues. It’s fairly divisive (go figure in these days and times!), and people have widely differing views on everything from person-first language to vaccines. We can’t even agree on what to do with our little month of April. For most, “awareness” of autism doesn’t cut it, and we should be seeking “acceptance” of our kiddos and their behaviors, needs, and neurology from the general populace. Some (myself included) feel like awareness is a necessary first step that leads to acceptance, but others are not content to be patient with the rest of the world.

I get it.

But if we as a community continue to argue about every issue that exists, the result could be worse than a lack of awareness. If the message is muddled or unclear, no one hears it.

We need to agree to disagree on the issues that divide us. Table them until we can tackle each in its own time. Focus on one thing that will do the most good for those on the spectrum.

In my humble opinion, this one thing would be autism awareness and competence of our nation’s educators.

It is unfathomable to me that teachers across the country are still unaware of the core deficits of autism. They are as of yet unaware that an IEP is a federal document, and a binding agreement to which they are held accountable. They do not know how to make simple modifications and accommodations for a growing segment of their student population. And of course I do not mean all, or even most teachers in this country. But our special ed teachers need help, folks. If our kiddos have a right to the least restrictive environment, we want them in general ed classrooms with teachers who have a clue. Because let’s face it – our kids are at school each day much longer than they are at home. And if they are met with adults who see them as a “problem” or ” more work” or are just clueless in general about how they work, how devastating is that to this entire generation?

If the community could just get behind one urgent issue, this would get my vote, and I don’t think we’re very divided on this one.

This would be my wish for April and the autism community at large.

Dear Autism Community

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Keys to Independence: A Challenge

Recently, Grammy & Poppy left town for a few days, and rather than disrupt The Boy’s routine, we planned for him to still go to their home after school to hang out until The Man or I could come to pick him up. In preparation for this, I had a spare key made, thinking I would give it to The Boy, show him how to work the lock, and let him practice for a few days. Except that the key I had made didn’t work, and when I attempted to show him, he got frustrated lightning-quick, and didn’t want to try anymore.

We resolved that situation another way, but it has me thinking about all of the things a 14 year old on the spectrum should be practicing for the day when he has a bit more independence. You see, we are both tired after our long days of work, and I don’t push too much at home, especially during the week. Weekends, I ask a little more, and now and then there are certain chores he helps me do. But I know we could do so much more, and work on that lightning-quick frustration level, too.

Planner nerds and Bullet Journal Junkies often have monthly challenges, and the idea is to take something you’d like to practice, like doodling or hand lettering, and do it each day with a guided prompt. You commit to the challenge, you do the prompts, and you share with a special hashtag on social media (and lots of people miss days, or get “caught up” later if they get behind – no worries). I’ve been thinking about doing an Independence Skills Challenge for the month of April, which also happens to be Autism Awareness Month. There will be a list of “prompts,” or specific independence skills to encourage each day or couple of days. I will share more details next week, and I would love it if you would join us with your own kiddos (on the spectrum or not!), but I’m excited, even if The Boy and I are the only ones doing it.

Keys to Ind Chall

Autism Awareness, Acceptance, and Advocacy

Well, it’s April kids.  It’s Autism Something day and month, depending on who you ask.  It’s such a controversy in our community, and it doesn’t even need to be.

Yes, we still need awareness, as is evidenced in our daily interactions with people who just don’t get it yet.  How?  I don’t know.  Maybe they live under rocks.  Maybe they are in denial.  Maybe they are just mean jackholes.  I don’t care.  But I will continue to attempt to enlighten them about my son and his buddies.

celebrate neurodiversityYes, we definitely need acceptance.  Yesterday, you read about someone who screwed up our Friday morning (and added a dose of anxiety that will last for the rest of the school year).  She definitely needs to find some acceptance real fast.  From kids who bully our kids, to teachers who still don’t know how an IEP works, to potential employers.  The world needs to hurry up and get with the program because we are definitely not in the acceptance stage in this society yet.

And yes, we need to advocate for our kiddos, and let them advocate for themselves.  Yes, adults on the spectrum need a national platform, and need to be included on the boards of their own nonprofits.  They need opportunities to show the world of what they are capable, and the skills to communicate their needs.

So whether you light it up blue, or walk in red, just be yourself in gold, or decorate with puzzle pieces, please realize we can’t do this alone, and we can achieve so much more as a cohesive unit.  Let’s agree to disagree on a few things, and consolidate our goals so that we can get to a point where everyone is aware, everyone accepts, and there is no longer a need to advocate.

Words Matter: Autism Awareness Day

Today is Autism Awareness Day.  It is a day to celebrate everyone touched by autism, and to increase awareness about autism.  Not “of autism,” but “about autism.”  Increasingly I have seen and heard people in our community dismiss “awareness” in favor of “acceptance”.  I don’t think anyone can argue against acceptance.  But I don’t entirely understand the dismissal of awareness altogether.

If everyone was “aware” of autism, my child’s band director may have been more open to his needs, and may not have decided that he needed to switch instruments or quit band.  If my son’s first social studies teacher of the year was “aware” of autism, she may not have decided on the second day of class that he needed to be in the special ed room instead of her class.  Even I continue to become “aware” of better ways to handle certain situations and behaviors in relation to my son’s autism.  So I don’t think we’re “done” with “awareness,” or that we are ready to “forget” it in favor of acceptance.

I think sometimes we get so wrapped up in our own little community bubble that we think everyone is “aware” but it just isn’t true.  Yes, acceptance is our ultimate goal, but we cannot get there without first helping others to understand the many facets of autism, through awareness campaigns.

People in our community are also upset, saying “Autism doesn’t only ‘happen’ in April,” which is silly.  Do any other communities of those with medical conditions get upset that they have a nationally recognized month which brings awareness to their fundraising efforts?  No one thinks it only happens for a month, but in all reality, it slips out of people’s consciousness after the month is over unless they are touched by autism somehow, and until they experience autism first-hand at a restaurant,  mall or other public venue, or at a get-together in the neighborhood or dinner at a friend’s house.  And then, because of Autism Awareness month, they may remember that what they are seeing may not be a tantrum from a spoiled child, or the bizarre actions of some weird kid.  “Oh yeah, he may have autism,” they may think, and react with compassion instead of condemnation.

Awareness. Acceptance. Awareness Day. Awareness Month.  Words do matter, and another word that is tossed around and shouldn’t be is “epidemic,” which signifies that autism is a disease, which it is not.  The new numbers released by the CDC are interesting, but not worthy of hysteria.  It simply puts an exclamation point on the need for more research, and more services for those with autism of all ages.

So happy Autism Awareness Day and Month.  I hope we reach billions this year, and begin to change hearts and minds which may have been sheltered in ignorance before.  I hope we can work together as a community to see this opportunity for what it is – something still very necessary to reaching our goal of acceptance for those with autism.

Happy teaching.