Autism Watch: 2007

Posts Tagged ‘community

Over the years, I’ve noticed how the autism community doesn’t always work together to help itself. It’s only my opinion — I’m just one of hundreds of thousands of moms with an opinion — but I can’t help but think there are probably a lot of people out there who would agree.

When my son was first diagnosed, I immediately joined several autism communities, online and off. Some I stayed with, some I didn’t; some were helpful, some were depressing; some were inclusive, others were cliques. In other words, just like the rest of the world, these groups represented the bad and the good parts of society and families. I took it with a grain of salt, and learned quickly that simply having a disabled child didn’t unite us as much as I thought it would.

We all come from different walks of life, and different perspectives. Some of us are drowning in autism research, others have moved beyond that. Neither is wrong, they are just different stages of dealing with having an autistic child. Some of us work outside the home, others are stay-at-home moms. Some of us have other children, some have other special-needs children, some of us have an only child. Some are married, some are single. Some are fully following biomedical treatments, and others follow whatever their doctors say. Some vaccinate, others selectively vaccinate, others don’t vaccinate at all. The group is diverse, and as a result of that, a huge pool of invaluable knowledge.

Now if only we could work together to use all that knowledge.

Instead, I see us judging each other. (I know, I know, I’ve written about it before, but as Autism Awareness Month comes up, with April 1st being Light It Up Blue day, via Autism Speaks, and April 2 being International Autism Awareness Day, I’m seeing more and more commentary coming up that just doesn’t seem in keeping with the ‘let’s help each other, we all have a kid with autism’ credo that people like to tell you they follow…but don’t always do.) Maybe I’m doing it too just by writing about it, but if we keep sweeping it under the rug, it will never go away.

I’m not a follower of any particular autism group. All of them have their downfalls, and some are worse than others. All of them also have their advantages and good points, even if they never touch the majority of those affected by autism. While I don’t fully agree with any of them, I’m a big believer in ‘any autism awareness is better than none.’ If it takes lighting my business storefront up with blue to get people to learn about autism, or to get people who know what blue means to think about autism, I’m going to do it. In fact, I’m going to dye some hair blue for the month — talk about getting attention, it’ll stand out a lot more than the puzzle piece keychain or vaccine t-shirt I wear the rest of the year.

Years ago, I needed some serious help in regards to an autism-related situation. The main group I’d been involved in basically put their hands up and wished me luck. Since then, I’ve seen them give money/services to others in the same situation while others, like me, get by with referrals from strangers online. Help isn’t readily available, but is given to those they choose, which seems more like a popularity contest or a ‘how biomedical orpro-vaccine are you? -based decision. I was twice refused inclusion in an article about autistic children because we weren’t biomedical ‘enough.’ To me, that a child that is improving with just a couple of biomedical treatments should be shouted to the world; shouldn’t we be telling people you don’t have to buy HBOT machines or mortgage your house again just to see some help? Instead, we have to be whole-hog or no one knows who we are. What a disservice to those with autism and to the message that autism can be improved.

I’ve talked to quite a few moms (and dads) the last couple of years who have gone radio silent — they disappear from lists, conversations, and support group meetings. When I inquire how they are, I hear that they’re just tired of the whole deal. Tired of the same few families being chosen to represent everyone else. Tired of the judgment they get for not being GFCF, or for letting their child get a vaccination. They’re tired of hearing what they’re doing wrong or being treated as though they’re stupid for letting their child take a prescription medication. Tired of being ignored or of not being part of the ‘in crowd’ because of a decision they’ve made that isn’t the party line. Some of these people desperately still need the support, and others were wonderful, giving members of our community who have much to offer by way of information and support. As a result of the negatives, we lose these people, and the opportunities they bring with them, because we can’t respect others’ opinions, feelings and choices. And to take it a step further, some people do more damage by trying to make their point, showing the world our lack of unity in a common cause, and time is wasted proving someone else ‘wrong’ or taking time/energy away from the positive that both sides could be doing.

I’m really hoping we can go into Autism Awareness Month together, and just be glad for the fact we have an awareness month. I personally tire of it not being as important/popular as other months. I know it’s not a fatal illness, per se, though the wandering children or those with seizures, their parents will say it is a fatal illness and they’d be correct. With the sheer numbers of those of us affected, it should be everywhere. So I’m going to do my part. If putting blue light bulbs up all over my yard gets people asking me why, then I’ll do it. Our neighbors know we have a reason, so they’ll ask. They see orange and black at Halloween, red and green at Christmas, so I’m glad to use a different color or it won’t get attention. My hair’s black, so I have to dye it an extreme color to get it noticed – blue works! Maybe I could get spray though and do puzzle pieces…. 😉

Be kind to one another. If someone doesn’t agree with you, it’s okay to disagree — just like I disagreed with my friend who told me that because her daughters were fine after shots must mean that shots are fine. But disagree respectfully. Remember the other people may have reasons for doing what they do, reasons you aren’t privy to, shouldn’t be privy to, or simply won’t understand because you don’t live in their house. And sometimes, sadly, they don’t want to understand, but it’s not your call. Assume nothing — and don’t judge. People learn a lot more from each other when information is presented politely, gently, and respectfully, not as though you’re a naughty child who just can’t stop licking an icy flagpole.

 

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Just to start out, I’m going to say no. Categorically, no.

I’ve been a part of the community now for almost six years. I didn’t want to be a part of the community, but I am. On most days, I’m glad to be a part of it — it got me through some very difficult days, I’ve made some wonderful friends (online and offline) and I continue to check in for resources and to get/give support as necessary. On other days though, I’m disappointed.

If you’ve read my blog at all, you know I speak my mind. Autism tends to do that to you. You don’t have time to mess around, so you get around to the meat of the issue or you just walk away and leave it because you have more important things to do. For a while now, I’ve just walked away because I have, like everyone else, a busy life, but there are times when I shake my head and sigh and think “What a shame.”

A few years ago, I was being included in an article about autism, parenting, and alternative autism treatments. I was excited to be part of it, because I really believe autism is not displayed to the world for what it really is.  (More on that later.) I also wholeheartedly believe in biomedical treatment for autism, be it whole hog GFCF diet and a bunch of supplements or just the addition of a healthy vitamin and removing dye from a child’s diet. I readied for my interview, and on the day it was to take place, received a call notifying me that we weren’t going to be able to be included. What? I fit the requirements of what you were asking for — I’m a parent of a child on the autism spectrum who is receiving biomedical treatment living in a certain locale, and my child is a male within the required age-range. How did I fit before but not now?

I was surprised at the answer: “You aren’t biomedical enough.”

Really?

First, what is “enough?” Secondly, why didn’t requirements list that up front, and probably most importantly, (thirdly?) why isn’t your article showing people that you don’t have to be GFCF, anti-yeast, seven daily supplements, chelation and HBOT to actually have biomedical success? Why is only the extreme being included?

They didn’t give me a good answer, but I gave up. This was when life was even busier now, as my child was younger and his issues were worse, and I didn’t have time to fight every battle. I wish now though that I had.

Much of the autism community longs for acceptance by the rest of the world. We push for it for our children, and we want mainstream medicine to give credence to our feelings and facts. We just don’t give it to each other. We aren’t doing ourselves any favors if those ‘facts’ only include only those that are the worst, only those that are the most extreme, or only those who make for the best media interest.  We don’t like it when autism research is ripped apart and nitpicked, yet are we guilty of it ourselves if we don’t allow for all those on the spectrum to be represented?

At the time, my son was taking a multi-vitamin designed for children with autism, was casein-free, was on an anti-yeast protocol and zinc for a mouthing/licking tic. And he was improving. Shouldn’t that have been enough? Then again, I heard then (and still do) from other parents that he should also be gluten-free and on a bunch of other supplements. We can sure be the harshest support system ever.

Another case in point: many autism segments on television shows, movies or news segments include the same families and usually severe children. My beef’s not with seeing the same people — they have the right to participate in whatever they choose — but what about the rest of the world? Are they not volunteering or are we just using the same spokespeople over and over because they make a bigger impact? How does one get ‘in the loop’ to be included so the general public can truly see the variance in autism? I won’t go so far as to use the word “clique,” which I’ve heard it referred to numerous times, because I’m not sure what the cause is, but the world is full of amazing autism families, and the same few are the only ones that will ever become known to the world. I also feel strongly that mildly affected children should be included as well as moderate and severe. Maybe it’s because I’m tired of hearing “really? Your son has autism? I couldn’t tell” because they don’t know enough about mild autism and therefore, they don’t think “hmmm, maybe he has autism” and instead think “What a brat.” Or maybe it’s because there are so many parents out there not getting their own children the help they need because the kids they saw in the piece about autism on last week’s news show all were non-verbal and very obvious developmental issues, tics or other obvious things. Probably some of each, and a few other reasons, too.

The next charity autism mini-movie that I see, I’d love to see it include those with Asperger’s who are so desperate to have friends that they would do anything to fit in but don’t know how, some verbal autistic children who are grades ahead in their class at school but can’t handle the blinking lights in the classroom, the children who aren’t potty-trained but are vocal enough to tell you their feelings on being teased for their diaper, along with the non-verbal children who stim and spin and hand-flap. That’s the real autism community, from one end of the curve to the other. It’s the very real spectrum, and maybe it won’t grab hearts as much as just the extreme kids, but why not show it like it really is?

There are awe-inspiring people in the autism community, and I’ve been lucky to meet many of them. When I need some help or want to share something I’ve learned, I’m equally lucky to know that they’re there. But I think we fall seriously short of equal representation. We want to show our worst, our noisiest and our most renown — it makes for better media. But does that make it better in the long run?

For the quiet, unknown moms, dads and children  in the autism community, the ones who aren’t online much and are working just to get through the day, you deserve the covers of magazines, the spotlight in a news piece, or the focus of a written article. I can’t give it to you — just a small blogger who probably speaks her mind too much, but I wish I could.

When my son was dx’d initially, online communities saved me. My husband was in serious denial, and I didn’t know anyone offline that had any experience with autism, so I spent hours seeking out help, support, information, anything. I was one of those people who knew nothing about ASDs, as even with all my son’s issues, we assumed that at worst, we were dealing with Sensory Integration Disorder, so we started this with absolutely no clue. I was desperate to find people who knew what we were dealing with and could give us some guidance, and email groups were it.

Since then, there have been numerous times I’d turn to the online communities for help — referrals to providers, opinions on therapies, suggestions on handling situations, or just “I know how you feel.”

But this week? I feel like the time has come for me to step away. I want to stay on top of what’s going on in the community at large, such as research, news, events, etc., but I can do that without being actively involved in email groups. I unsubbed from five groups yesterday, and while I felt just a tinge of sadness, I was overwhelmingly relieved. I felt, and feel, enormously liberated, and I am even more glad I did it today than yesterday.

Lots of things contributed to the decision — not just one event, though it was one email that finally pushed me off the fence. Over the years, I’ve seen a lot of emails that make me shake my head. I can participate by stating something that’s going on and get no response, and someone else two minutes later can say almost the same thing and get nine sympathetic responses. That’s the nature of the online community, as timing is everything and people respond when they’re available, but it’s disheartening when you feel invisible. I’ve seen new members get jumped on for asking basic questions. A lot of people ask about the flu vaccines; some of those people are welcomed while others are borderline attacked or get posts implying they’re simply not educated for even considering the vaccine. Some people want to debate when all you want is information or share your opinion on someone else’s. Basically, any response you make is fair game for attack anymore, and it didn’t use to be this way. I’m not sure what’s going on in the autism community, but the divisiveness that used to be focused on biomedical vs. traditional is growing. We as a community want the freedom to do what we want with our children, as in “How dare they try to make me vaccinate!!” but we turn on each other so quickly. I’ve mentioned it before, so I won’t digress but I wonder what it’ll be like in another six months. Where will parents of newly diagnosed children go then?

Don’t get me wrong — not every group is this way. There are wonderful people in the community who will still take the time to guide, support and give a virtual hug, but there are many people who will tell you you’re wrong, make assumptions about what you’ve said/done, and give you a virtual snub. Be careful what you share online. You can only explain your concerns or situations in so many words in the written form, and it can and will be open to interpretation by anyone that sees it. Responses can be harsh, even if you’re in the worst mood to deal with it. If someone has made a judgment about you, such as “not biomedical, not doing enough,” the responses you get will be tempered by that pre-formed opinion.

It’s like any other group, online or off. I’ve learned I just don’t have the time anymore to engage. I don’t want to read the arguments regarding what group to donate money to, I don’t want to read about how disgusted people are that others in the world dare to believe in a flu shot, and I can’t take one more whine from a previously stay-at-home-mom who just started getting IHSS a few months ago and is home all day alone while her kids are in school yet is peeved that IHSS rates are less. Or how we working moms get “respite” while we’re at work all day, yet it’s our tax contributions that are paying for respite for others. Life is stressful enough, I don’t need to have it added to and when I found myself hitting “delete” more than “read,” I know it’s time.

Don’t let my opinion sway you if you’ve never been in an online community and want to give it a shot. Really, they aren’t all bad. But, be cautious. Consider what you’re looking to get out of responding, and what you can live with. Be prepared for negativity, and don’t give identifiable details. I used to answer just to join in, then I realized how much time I was wasting — I work, I have a job and my time is at a premium, so if I want to join in a conversation, I have other opportunities with people I actually know and trust. That’s the problem with the online world, it’s easy to feel a part of the group and easy to feel you can trust people because ‘it’s just words.’

I’m going to save my words now for my anonymous blogs, for my offline friends, and for personal emails between individuals. It’s truly liberating to realize how much time I’ve saved myself and how I no longer need that kind of communication. And I’m realizing that wisdom does come as you get older! Who knew I’d ever really believe that cliche.

Now I’m signing off to see if I can calm the little guy. He’s getting some serious anxiety over waiting on someone to arrive, and I need to help him work it off or he’s going to be an overstimulated bundle of nerves.

I haven’t blogged recently — busy (like everyone else), migraines, dd having seizures, sick kids, and in general, just not sure what to say. I don’t want a blog full of only rants about how bad my neighborhood is, how mean people are, and how tired I am of being afraid to answer my doorbell. Until I had something non-rant like, I decided silence was golden.

But — you knew there was a but coming — I wanted to come out of hiding to add my opinions to the topic-at-large right now. You know the one, the one where we as a community in general are pretending we actually have a right to know, or a right to know better, than what another family should have done or has gone through. You know, that kind of judgment that we absolutely hate to have pronounced on us.

I love the friends I’ve made in the autism community. I’ve learned more from these fellow trenchmates than anywhere else, yet I still feel, and have mentioned before, that sometimes we’re the least tolerant of each other, yet we expect, or demand, that tolerance from anyone outside of the autism community. This seems like an extreme of that, and it’s pretty sad, for lack of fancier adjectives. Sad.

Without repeating everything others have said, my thoughts are this: the Travoltas are humans. They are parents who love their children, except they have money and celebrity. Why does that money or celebrity make them responsible for sharing their personal trials or tribulations? So they didn’t tell the world their child had autism. If that was me, you’d not blink an eye. But throw in money and celebrity, and I should share? Where’s my privacy? Where are  my rights? My child’s rights?

Leave the Travoltas alone. Their child died. He is gone. They are suffering the biggest loss a parent can suffer. Leave them be. They didn’t owe us any facts. No celebrity does — if they do, it’s a bonus and we should be thankful instead of expecting it. In fact, now, I’d expect less celebrities to come forward. Who wants the scrutiny, the judgment, the “you should do xxx and not do xxx” that the Travoltas are seeing now? How dare people hassle them for their choice of medication, or no medication? People, we weren’t there. We aren’t there. They owe us NOTHING. Back the flock off.

There, I said it. And on the other side, I do wonder why autism is seen as something, by Scientology, that cannot be recognized, but I’m not a Scientologist (thank God) nor will I ever be, so I can’t speak further to that. If they find it shameful or fictitious or unmentionable because it may require psychotropic drugs…well, I’ll just leave my thoughts to your imagination in that regard, though I will say, doesn’t God love us all?

On that note, I hope something else happens soon to distract from this situation. There are so many more urgent things to discuss, like my son’s new social skills program, YAY! I say we all talk about that, until something more exciting comes along. Sound good?

One thing that strikes me as odd, as perplexing and disturbing, is that despite how we parents of autistic children want and expect tolerance everywhere — school, restaurants, airplanes, churches, anywhere — how quickly we turn when our child or our child’s class has a difficult experience with another special needs child.

I use the word “we” obviously as a generality, not a blanket statement because this doesn’t apply to everyone, but “we,” the parents of autistic children, are our own community. Within that community, we share our stories of school problems, insurance issues, health dilemmas. We seek support and information, and we commiserate, truly commiserate, with others within our community. But, apparently that stops when another special needs child bites our kid…pushes him on the playground…disrupts his studies one day in class…says something mean, and so on.

Now, I’m not saying that we should put up with anything that other special needs children do, but how can we rant about what a neurotypical (aka non-autistic) child does to our autistic child, when we do it ourselves? How can we expect others to be more tolerant if we exemplify “do as I say, not as I do?” Doesn’t real tolerance mean understanding that the other special needs child needs that same compassion we want when it’s our child causing the problem?

I’ve been on both sides of this. I’ve been the parent of the child treated badly by a neurotypical kid, the parent of the child punched by another autistic child, and the parent of the child biting another child. (And the child he bit? Autistic as well…but to be an equal opportunity problem, he has punched a non-autistic child, too.) I know how frustrating it is when you have to fix your child’s boo-boos that were caused by someone else. And I know how frustrating it is when you have the school call you to tell you your child hit someone else, and the parent is unhappy. Neither side is a pleasure. Maybe having been on both sides has helped me to understand it more — maybe it takes having your child be the problem at least once to truly get what it is like, the mix of emotions that you feel, the need to protect your child but the knowledge that he hurt another child, or hurt the child’s feelings.

I met a parent recently who wanted to call the police because a child in her daughter’s special-needs classroom bit her daughter, a couple of days after the child pushed her daughter. She was angry, and wanted something done. I didn’t blame her, I understood the need for a quick and safe resolution. But it also needed to be fair. And fair to both. Sure, the other child shouldn’t bite and shove, but where was the teacher? Why wasn’t there supervision? And why isn’t that supervisor, or the person who failed to secure it, the one in trouble? And why call the police? Did I mention that this child was 8? People don’t realize what calling the police does. It mars the child’s future, it leaves a nasty spot on his/her record, and that of the parents. And autism is widely misunderstood, so the special needs child who clearly needs more supervision and behavior training gets to learn to deal with the police, seeing his parents stressed, and all the legal hoopla that it brings. Who in the world wants to bring that onto another family?

In short, if we’re going to ask the world to accept our children, we have to be ready to accept our children.

Mine, yours, all.

If we want the general public to tolerate our children’s behaviors, we can’t be the pot calling the kettle black…or calling the police or making a scene with another family because their child displays behaviors due to their disability. If we want fairness, we have to display fairness in return. It only works when we all want the best for all our children, not only when it suits us.

If you’re faced with a situation where another special needs child hurts your child or upsets your child’s classroom, remember what it feels like. Remember that support is critical. Remember that this family may or may not have the support or knoweldge they should have, that you may have. Be a help, and in the spirit of a resolution that works for all, don’t take it out on their child. In the wrong situation, it could be your own. What kind of response would you want then?


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