Enough with Awareness. How About Autism compassion?

Yeah.  It’s April.

I tend to struggle around this month now.  When I was a noob–that is a parent of a newly diagnosed kid–I was all “Yeah, Autism AWARENESS!  Blue stuff!  Fuck yeah!”  But now, not so much.

This stems from a lot of things.  Primarily, it’s because I’m not a fan of Autism Speaks or it’s model of celebrity talky talky/money raising.  There are those who say they do a lot of good work–and for those people, I am glad they have something that gives them some inspiration and hope. I see a “charity” that seems to pay celebrities a great deal to raise awareness and funds,  and hold “walks” only to raise more awareness and funds. 

But that isn’t what my child needs.

This last weekend we went to the park.  Where my child was having fun, but also feeding some sensory issues.  (read: throwing sand)  My Old Man was trying to get him to do something else that wouldn’t alienate every kid there when he had a conversation with a little girl who happened to be in Benji’s class.  He asked her how Benji was in class or if he had any friends (since our son can’t answer this question himself) and she told him conspiratorially that “he’s kind of a bad kid”

And I wanted to puke.

Not that he’s acting up in class.  I KNOW he’s acting up.  I get the behavior reports.  DAILY.  It’s that this little girl has seen him act up, but no one has talked to her, or her peers about Ben.  About his differences.  About his challenges.  That there hasn’t been a lesson about how to be Benji’s friend, because he has trouble initiating play.

Awareness needs to be more than numbers from the CDC and scare tactics and conversations about vaccines.  It needs to be more than spreading generalizations about SOME traits that occur in SOME people with autism.  There needs to be a component of compassion.  While people are being made aware, maybe they could be reminded to be kind and giving and compassionate?  Perhaps the awareness we need to focus on is our own awareness of OUR actions toward those around us who are different than we are.

I for one plan to spend April working on my compassion.  Not only to help my child, but to help the world. Pay it forward, help the lesser of these, maybe educate someone who doesn’t know why my kid loves throwing sand.  And yeah–maybe a chat with the resource teacher about helping my son’s class understand who Benji is.  Because that is 100x more worthwhile  to me than walking around a track all day.

Categories: Autism | 20 Comments

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20 thoughts on “Enough with Awareness. How About Autism compassion?

  1. Our boys are very similar, and I’ve had the experience with more than one child telling me that my kiddo is the “bad” kid in class. It hurts. It hurts that schools don’t think enough to educate the class about autism and what the behaviors mean.

    It’s a long road ahead.

  2. We’ve had similar things when my son tries to dump pea gravel from the playground on other kids’ heads because HE likes it. I know that if one of those kids had said, “I don’t like that, stop it. Lets play something else”, he would go along with that. It hasn’t happened except when I have talked to the kids myself. I hope that awareness can lead to compassion, acceptance and inclusion. I know that it has to start with parents of other children.

  3. I had the “Harri is the naughty boy, so we don’t play with him” experience too, which sucks. This year I sent a letter to all the parents to let them know that he was trying his best but had impulse control issues that might look like naughtiness to the other kids and so if they mention anything could they, as the parents, discuss with them how he is trying. Feedback so far has been really positive but I hate that this is even necessary.

  4. My post today expresses almost the exact same thing, I’m not all about the blue shirts and the ribbons and the awareness anymore. I just want kindness and the opportunities my daughter deserves.

  5. My sons school is spending april doing that exact project. daily autism awareness month announcements and I know that they will promote compassion because I wrotethem :)

  6. Autism Speaks might not be everyone’s fave, but they are doing a lot in Tennessee to try to get Autism insurance reform here. We are not one of the states where ABA/OT/PT/etc is covered by insurance, and they are right behind the politicians pushing for it to be covered. We are one of the 3 worst states for autism resources, and so far, they are the only group that is out there fighting. I don’t know if they are just focusing their efforts in the worst states… We literally have nothing for children with autism. Disability may or may not be granted. There is only one daytime school in East Tennessee that teaches children with autism alongside teenage sex offenders… And one boarding school for nonverbal children who are wards of the State. And, that is it for us. Might as well say nothing…

  7. Hanna Ahmed

    I was speaking to another parent over the weekend, who like myself, also has a son with ASD and is a school teacher. I asked her if she felt that the schools should be doing more with regards to explaining what autism is to their class, particularly if there are ASD children in the school who are being perceived as being naughty etc.
    Her response was that schools are hesistant to step in and explain a childs behaviour because they dont want to single that child out because of their disability. She also said that there were some data protection issues with staff discussing children’s conditions with the class without prior consent from parents.
    We are in the UK, so I dont know if this would also be the case in the States..?

    I have to say that I would have no problem with the teachers explaining to the class why my son was behaving differently. I would rather the children learnt exactly what autism is and hopefully grow up to become more compassionate individuals, rather than hating or making fun of children like my son.

    p.s. just came across your blog today…love it :)

  8. There’s just so much we need to do to prepare our children for this world…and vice versa.

    Compassion and education do sound like a good place to start.

  9. Kay

    As a teacher, I have to present the other side. We are held by strict confidentiality laws and cannot point out or identify any child with special needs. The kids, however, have not trouble finding those who are different. But without legal releases from parents, we can only encourage students to accept those who are different. Explaining autism and informing students why “Johnny” acts the way he does is completely illegal..

  10. I’m not coming across right–i don’t need my son to be explained–i need AUTISM to be explained. Or lessons on how to work with those who are different. Before my son began mainstreaming in his other school, the resource teacher went into the class and read them a book about different brains, etc–something inclusionary. and it helped. I think part of “autism awareness” needs to be a component of compassion in ALL classrooms–so that when kids come across kids like my kid, or anyone perceived “different”, they can hopefully take a moment to assess and not just place the “bad kid” label on him. As a former teacher, i am also aware of the legal ramifications.

    • Kaytee

      I know I’ll be slammed for this, but it’s worth noting that there is sometimes a relationship between the actions of a child with autism and “bullying” from their peers. For example, there’s a darling boy called B, who has autism and Tourette’s, in my daughter’s 4th grade class who yells her “Fatty Patty! Fatty Patty! &%&$!” at her several dozen times per day (his aide thoughtfully keeps track) – but this is not considered bullying because it is a manifestation of his disability. It is, however, considered bullying for my kid and her classmates — all 7 of them; the joys of small town life — not to invite B to their birthday parties.

      Every year, B’s mom explains his disability to the whole class. Intellectually, I get that he can’t help and my girl does too (as much as any 8 yr old can) — but she hates, hates, hates being called vulgar names all day, every day and I can’t blame her. I require my girl to be polite to him (as this stops the world from descending into anarchy) but cannot make her like him.

      (And yes, it must be heartbreaking for B to be the kid without friends. It’s also heartbreaking for my kid and her classmates to be called vulgar names a million times a day by this little boy with a developmental disability. I’ve taught my kid to have compassion for him, to be polite and to not retaliate, regardless of his actions. This is the best I can do, I’ve fulfilled the social contract. Beyond that, a kid makes or doesn’t make friends on his/her own merits).

      • I’m sorry you have to deal with that–but i think you must admit that is not the norm. If my child were saying horrible things like that he would be corrected, Autism or not. Autism is NOT a free pass for bad behavior. it does NOT have to be tolerated–and whomever told you that is crazy. My son likes to be physical and rough–be he KNOWS if he is told by anyone to stop that he has to stop or there will be consequences. And most parents i know with kids on the spectrum hold their kids to the same, IF NOT HIGHER standard of behavior. I know my kid gets poor treatment from others FAR MORE than he dishes it out. And i’ve got parents here that could tell you the same.

        and i hope you are not implying that my kid doesn’t have friends because he is a creep and bully. because for that you would get slammed. Imma use my manners and assume you did not mean that.

  11. Amanda

    Hi, Dawn! I love your blog — I’m a teacher too, and I love reading your story. You write well and convey the parent side of the picture (which I don’t get to see!) very clearly. I have several students who join my class for a lesson or two a week. Most are autistic, with varying degrees of academic and social abilities, and my regular ed kids accept them at varying degrees. They have the most trouble accepting the students whose behavior is most unlike theirs. What do I wish? That everyone accepted everyone else. What do I think would help? If the parents — who know and love their children more than anything, and can express their needs/wants/abilities better than anyone else — would come in and talk to my students about their child. I would love to have them say, “Danny can’t read as well as you can, and he might need some help writing/drawing his answers, but he loves to play Legos and talk about cars. Sometimes he gets angry or frustrated, but you can walk away if he starts hitting, and you can come back when he’s calm and ready to be friendly. It makes him very happy when children sit with him at lunch or walk with him on the playground.” As a teacher, I might not know all those things about Danny — or be allowed to explain why he acts the way he does — but his parents do. A couple of years ago, for Career Day, parents of one of the autistic children came to talk about their jobs to the whole grade level. Watching them interact with their child, and watching my kids watch them!, was powerful. I learned more about that child in those 20 minutes than I learned in any conversations with his teacher or by reading his IEP. My kids interacted with him very differently (much more patiently and acceptingly) after that day. As a teacher, I need help from the people who know the child best, which is often the parent. -And that’s my way-too-lengthy two cents. :)

    • See–this is what i’m getting at. My son’s class doesn’t need a lesson in “how to work with Benji” they need a lesson in “how to work with ANYONE different” I have and will again go into the class and work with the teachers–i understand my own responsibilities here. What i’m talking about is a grander scheme/idea that we start talking to our kids–ALL the kids–about difference. Not just noticing and labeling difference–but accepting it.

  12. I am so tired of hearing about education of “awarenes.” Of programs. How about people changing their hearts? I’m tired of those on the spectrum-wich includes me-being proccessed. It won’t change anything if merely pointing out the problem. Only caring will. A grandmother of an Autistic child is all for quiet hands. lLets get the disorder out of them. We don’t need that.. Enough already! And people with Autism are auccused of lacking empathy? Enough talking education blue lights ribbons Autism speaks, bullying “understanding” stygma and violence. It’s time to care!! Do you think telling the Nazis that Jews were being put inthe camps would have stopped the holocaust? It seems NT’s are willing to do anything but care.

    • I’m sorry Catherine–i may be misunderstanding you–but are you saying that i am promoting this awareness nonsense? because i think i am pretty clearly NOT doing so. I am sorry if you thought i was, and perhaps i was not clear enough.

      My point was, i think awareness campaigns are a waste of time, and i would much rather see compassion and acceptance–FOR ALL PEOPLE– being taught. Compassion is a much more important life lesson than any blue light bulb or ribbon, IMHO.

      • I completely agree with you. It’s just that that suject really ticks me off. And I sort of vented. It seems that people are kept so busy with blue lights and ribbons,, it prevents them from learning the truth about how those on the spectrum are treated. By the way, your little boy is so cute.

  13. Pingback: Enough with Awareness. How About Autism compassion? | Appalachian aspie.

  14. AKborn

    Thank you. I’m working on a website (not about autism exactly, but connected ) and when I Googled “how to speak compassionately about autism” I got you, and your sentiments are perfect.

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