Thanks to D’Julie for the heads up on this Dear Abby piece.
I found this interesting in the sense that conversations about autism that take place without any parent of an autistic child or autistic people involved can be recipes for all sorts of craziness.
It also makes you wonder what people are saying when we’re not around, but that’s another story entirely.
If they mind, I’ll take this quote down, but here’s the link to full piece. (Scroll down a little – it’s the second one.) I got curious about how you all might respond to it.
DEAR ABBY: My 8-year-old nephew was diagnosed with autism at the age of 3. He has made amazing progress with therapy and has advanced so he is practically functioning at his age level.
Our entire family has teamed up and joined a charity that raises money for autism. We have devoted our time and energy to this important cause. My sister (my nephew’s mother) refuses to get involved! She says she is “too busy.”
We all work and have other activities, yet we still make time to devote to this cause. She doesn’t work and has no other responsibilities outside her family that prohibit her from participating. She says raising money isn’t something she likes to do.
I don’t have much time for it either, but our family MAKES the time because this cause is important to us. It makes me furious that she won’t help raise money for her own child’s disorder. How can I talk to her about this without seeming confrontational? — RAISING MONEY IN FLORIDA
As a parent of an autistic child, how would you respond?
Click here to see what Abby said. (Second letter down.)
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{ 9 comments… read them below or add one }
I’m not a parent of an autistic toddler … but I’d say the mom in question has every right to not raise money for autism research. First off, she probably is pretty busy. Secondly, if she has “extra” time she’d likely be better off taking a break or earning some extra income for her son’s treatments. Thirdly, she may feel like these events are a “who has it worse?” contest. And she doesn’t want to be reminded how “lucky” she is that her son has mild autism or autism that responds to treatment so well. She may not feel very lucky about it at all.
I can think of at least 3 other reasons why this woman isn’t obligated to raise money for autism research, but I’ll stop with these
-Pam
The parent has every right not to raise money for Autism research. Perhaps the mother doesn’t believe in the direction the research is going. Perhaps she feels it would be better spent being donated to a charity that serves kids with ASD that can’t afford treatment.
What gets me the most is when the writer states that the mother has nothing to do but raise her child. Having a kiddo with Autism usually means a ton of time on therapies, creating supports for those therapies, home follow up and structure design, preparing for IEP meetings, etc. I bet the mother has more than enough work to keep her busy 24 hours a day.
Wow internal family fighting over autism and how a parent spends their time and whether it is fundraising. I am so glad I am a single parent in CA while all my family is in NJ. I ceased communication 8 years ago due to the negativity towards autism.
I would not lift a finger to do anything for autism speaks. The audacity of this family member and then to publicize it in a newspaper column. I would end ties with her immediately after reading that.
Wow. I think I’d explain that adjusting to an autism diagnosis is difficult and different for every member of both an immediate and an extended family. Everyone needs the freedom to respond in the way they must. This mom needs time to grieve and time to figure out what “normal” really means, how to teach her kids, how to advocate for them, how to adjust her life expectations to this new journey. While jumping on the enthusiastic, active, fundraising band wagon might help the extended family handle things, it might just be too much for mom, who is doing the 24/7-lay-down-in-the-dust-I-think-I-might-go-crazy work of raising a child with multiple challenges. At the same time, hopefully mom understands that her extended family has no frame of reference for what she’s living if their children are all neurotypical. Bottom line: we’d all do well to show a little more grace and compassion.
Hi everyone! We got back from our weekend trip last night, and it’s been exhaustion all around the house today. But it was great to find everyone’s thought-provoking comments to this post!
Before I start to ramble, I think the more terse version of my response would look something like – “Instead of raising money and spending time writing me, how about raising your level of understanding about autism and parenting an autistic child and spending more time and energy supporting your sister instead?”
Every time I hear a comment about an autistic child or parent of one that I find ‘ignorant’, whatever part of me responds to such things tends to immediately jump in two directions. Part of me wants to tell that person off, and the other wants to try to make it a ‘teachable moment’ and help (hopefully) that person to learn something new about autism and all the good and challenging ways it affects our lives. I try hard in my non-Internet life to just walk away if I’m about to just go off on someone. I just don’t need that kind of added stress in my day.
So, I think there is a little bit of room perhaps to make this a learning opportunity for the person who wrote in, but I’d have a hard time getting over one important point – this person felt the need to write Dear Freakin’ Abby about this. That’s like the nuclear option for family dysfunction. I think the situation is far beyond redemption if it’s come to writing Dear Abby about it. No offense to Dear Abby, but it seems like a really high threshold of craziness if a family member feels the need to draw a columnist and stranger into it.
Well, that and the whole self-righteous tone and being ‘furious’ and the all-caps thing that they MAKE the time to raise money and whatever made them think to call themselves “RAISING MONEY IN FLORIDA” and not “PROUD AUNT OF AN AUTISTIC CHILD”, and, well you get the point.
Around here, we’ve taken the approach of adopting what we call the “Nod and Listen to the Music in Your Head” method to advice and commentary that ranges from unwanted to the ridiculous to the outright rude. There are many cases where the person talking at us isn’t really in a place where they’re going to learn from us, and we really don’t feel like getting into it with them for whatever reason. So we just keep nodding as if we’re paying attention and then just keep listening instead to whatever pleasant tune is echoing around in our heads at that moment. I pick my battles carefully because I only have so much energy to give right now.
There is a limit, of course. If people want to say stuff about me or whatever, I can usually let that go. If people act like they’re all indignant or whatever, I just hold up the hand and ask them to talk to it instead. But if people start putting down my son or saying anything even remotely negative about him, they better bring some armor and a change of underpants to that fight.
I don’t think there’s a right or wrong way to respond to this. I like to think that in the broader community some of us could voice the anger and others of us could try to help her learn something that will help her support her sister and nephew.
I guess maybe our goal should be to tell our stories authentically and speak the truth to the world of who we are and what we need and how infinitely wonderful our children are. Sometimes that means bringing down some righteous anger, at others it may mean being the understanding teacher, and others still may call for something completely different. I don’t know. I still feel very new at all this.
About all I do know about this is that there are a lot of people who have a lot to learn. I imagine we aren’t exempt from that either. And we have to do something about it.
Hi all.
I agree with everyone’s comments completely! I can’t resist adding one more little gripe about ‘RAISING MONEY IN FLORIDA’.
This woman opens her comment stating what *amazing* progress her nephew has made with *therapy*. How he is practically functioning at *his age level*.
First of all, I can’t believe she doesn’t seem to recognize that amazing progress is hardly made by autistic kiddos with therapy alone. You can bet nephew’s *amazing progress* is due in large part to mom’s committed practice at home of things learned in therapy, coupled with much attention, work, help, support etc., and general love and devotion that this mom gives to her son every. single. day. A full time job!
Second of all, I can’t help but feel like her second comment smacks of a value judgment that says, “my nephew is doing so well because he has almost ‘caught up’ with his typical peers.” (the whole ‘he barely seems autistic’ thing).
But, of course, I could be reading to much into that one due to being miffed at her right from the start. Anyhoo, just my two cents.
I think it is perfectly natural to not want to raise money for an autism group if you are a mother of an autistic child. So many of these groups focus all their money on “finding a cure” which I think does not exist and if it did I am pretty sure I wouldn’t be interested.
My son is a wonderful, sweet three year old boy and autism is part of who he is. I find that so many of these groups are filled with people who veiw autism as a death sentence. They are desperate for their children to be “normal”.
I did the whole “raise money” thing last year and at the end of my fundraising I thought to myself, “God, wouldn’t it be nice to use all this money on Logan’s therapy.” All these people who love and support us have donated this money and I am not really sure where it is going. Our own family is barely scraping by just so Logan can recieve the therapy he needs and I have just sent in a bunch of money that might be used to find a genetic screening for autism that will one day be used to much like the screening for Downs Syndrome.
@Dominique – I think we tend to call your first point the ‘black box’ idea of autism therapy that many family and friends sometimes have. It goes something along the lines of – because I don’t know what all you do with him all day long, I’m just going to come up with something based on my experience with my own (neurotypical) kids and what I heard on TV and assume that’s close enough.
Everything abhors a vacuum, and when people don’t understand something, it’s human nature to come up with what you think is a plausible explanation of what’s going on based on what you do know. As you point out, though, when it comes to parents of autistic children, there’s a lot people aren’t going to have the foggiest clue about unless they walk in our shoes a while. I really get my dander up when other parents (our age or elder) try to offer advice because they either think it applies to every kid on earth just because it’s what they did or it’s just that we’re too stupid to parent.
My favorite ever concerning lack of verbal communication – “Have you tried talking to him more?” Me – “No. We all converted and became mimes instead. It’s been tough on him.”
I think you’re right on with that “he’s not that autistic” kind of undertone here. If I could vote on the top 5 things we need to cut out now, one would be the marginalization of children and adults who people think somehow aren’t ‘autistic enough’ and the parents and others who care for them who are then seen as being too overly dramatic about their challenges.
If you want to see this played out in the full ugly, go read the things said about autistic adults who are trying to advocate for rights and inclusion for all autistic persons. Some people say society shouldn’t listen to them because they aren’t autistic enough (or as far as to say that they can’t be autistic) since they are articulate and organized and able to hold down meaningful careers and all that.
OK, I went way off on sort of a tangent. But ultimately I think the lack of awareness of people like that letter writer leads not only to judgment within families but sets the tone for how autistic persons and their families are viewed in society. There can be an expectation that everyone who has autism is a certain way and that their parents are a certain way, and the unique expression of this mom and her son are completely squashed as a result. That has to stop.
@Shanna – Amen to all of that. There are autism-related charities I would give money to or raise money for, but I am very careful with that. There are few categories of charities so wildly varying in mission, quality, and general morality as we see within autism-focused nonprofits. In what’s not really a state secret, I am also deeply offended by a number of them.
We’re still trying to pay off a mountain of debt – but amazingly we’re making some progress – so we’re not exactly anyone’s ideal financial donor right now. I think we can all commit to a certain amount of ‘sweat equity’ by volunteering our time and talents to some cause or another – whether that cause is a nonprofit, a blog, writing letters to people in political office, or whatever else – if we can’t give our actual dollars. But I’m obviously very careful in where I invest my time and energy too. I have to believe in the cause, but it also can’t take too much time away from my family. All that is a very hard problem of time and math to ever get to work out well these days.
If there’s anything we need to be working on as parents it’s what you identified – trying to counter and transform all the negative messages about autism and raising an autistic child. I don’t mean that we should sugarcoat everything. We can tell people honestly about the challenges while sharing with them all the joys of our children and our lives with them. It seems like so many people have to see things in extremes – it’s not a death sentence nor is it all fluffy bunnies. It’s a wild ride of emotions for sure, but we’ve got to start changing the tone.
You really zeroed in on another huge issue that someday I hope to write about. The “What if there were a pre-natal genetic screen for autism?” ethical question has so many vast implications that I hardly know where to start. If you want to research something that will take you on an emotional roller coaster, read about how adults and children with Down Syndrome and their parents wrestled with that question. Everything they have put into trying to teach the world about the joy and beauty in their lives to combat the negative stereotypes is inspiring, though you feel in their words the uphill climb they often feel like they’re on with the rest of the world. Yet, they move on with relentless determination. It is incredibly moving. But it is also sobering as in all likelihood we’ll be on their stretch of road someday with autism.
My brother-in-law’s brother had Down Syndrome. He died not long ago. He was kind and loving and someone who gave so much to others. And honestly I was too stupid to really get that until the J-Man came into our lives and taught me to open my eyes and see more about what life is all about.
OK. I’m really being long-winded tonight.
Thanks for writing!