Silencing Ourselves- A Plea for Civility in the ASD Community

Poking around the autism blogosphere last night, I came across some commentary that unsettled me.

In one thread, a mother of a young autistic boy, asked  if anyone knew of a DAN doctor near her city who didn’t have a long waiting list.  It was a simple and direct question, not inviting a debate or attack upon her online person.  But this unfortunate visitor had popped into the wrong thread.  She was immediately attacked for even thinking about trying a biomedical approach to helping her child.  Phrases along the lines of “b****hslap Jenny McCarthy”, “autism cult”, “inflict that upon your child”, “stupid”, etc. began flying.   I felt sorry for that mother.  She probably, like many of us, is desperate to try anything to help her child.  The fact that she was even on the internet looking into options for him shows her love.  Sorry parents simply aren’t in these forums, blogs, and social networking groups.  They’re too busy neglecting their children.

On the flip side, I’ve seen parents who make mention of their child refusing to eat anything but bread get trounced by biomedical devotees condemning them for not being willing to “cure” their child by trying a controversial treatment.  The implication being that one day when that parent is “willing” to help their child, they will look into it.  How unconscionably cruel.

I have seen parents marveling at their children’s progress since beginning ABA therapy, only to see them attacked for “inflicting” a therapy that amounts to little more than “dog training”.  Is it so difficult to imagine that some therapies are beneficial to some but not others?

I, along with others, have been chided for using the word “autistic” instead of using “people first language”.  As though parents who use the word “autistic” don’t put their children first.

I have seen parents and teachers denounced for not wanting to implement full-inclusion for their autistic children.  For me, that’s a choice about what is best for the child.

And, most recently, the “neurodiversity” movement has been blasting well-intentioned parents.  Please do not misunderstand me.  I’m a teacher.  I’m all for appreciating the diversity of children and promoting acceptance.  I like some of the positive things that the concept of neurodiversity can bring about.

But neurodiversity, in my opinion, does not have to preclude parents wanting to help their children fit in a bit better in a complicated world.  Recently, I’ve come across many threads of angry people in our community insisting that parents of autistic children be happy about the challenges facing their children.  It seems there is great pressure these days to deny the difficulties, disappointments, fears, and sadness associated with the loss of a typical childhood.   Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.  Told to buy perky t-shirts and snarky bumper stickers.   Some of the commentary associated with such discussions barely stops short of suggesting these people don’t really love their children for who they are.

And after months and years of reading such attacks disguised as “commentary” and “debate”, it has occurred to me that we are spending a great deal of our time teaching people that it is in their best interest to shut up.

After all, while many of us are confident in being vocal, I would  guess that the vast majority of people in our community are simply everyday people.  People who have no desire to control the parenting decisions of others.  People who do not purport to know definitively who is right in any of our controversies.  People who are simply trying to do what their instincts say is right regarding their own children.  And, like most folks, these everyday non-blog espousing parents have no desire to ignite a debate or have their emotions stomped into the ground.  Sheesh.  Parenting and advocating for a special needs child is hard enough without putting yourself out there like that.

So I find myself wondering why we, by attacking people whose approach to therapy and educational decisions for their children is different from our own, think we are somehow furthering the cause of autism?  A well-intentioned “Hey, you might want to check out this article that has some interesting things to say about blah blah blah” would be more beneficial, I think.  I know I’d be much more willing to hear another viewpoint expressed that way.

For, by jumping people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.  We are discouraging them from sharing any more.  And we are teaching those not willing to endure the same attack that they should go someplace else.  Silencing their voices.  Problem is, I can think of a lot of disturbing examples throughout history when silence was encouraged of dissenters.  None of that turned out so well.

I worry about the degree of politically correct autism discussion pushed on us these days.  You can hardly turn around without offending someone in the ASD community.  I worry about the parents who feel ashamed for considering or trying a therapy that others don’t agree with.  Saying that you have concerns about an approach is one thing.  Suggesting that they are abusing or not loving their children is another.  I worry about those parents who might be afraid to express their genuine grief out of fear of not “embracing neurodiversity”.  I worry about the silence that will follow.  I want to hear all of our voices.  Because, if we already knew all of the answers, we wouldn’t need these discussions to begin with.

In the discouragement of telling the truth about our experiences,  I wonder if autism will be granted even greater powers of silence than it already has.

For autism has already silenced too many of our sons and daughters, brothers and sisters.

We must stop silencing each other.

If you liked this post, you might enjoy:

“This is MY Reality” by Sunday Stillwell.

 “Stirring Up a Hornet’s Nest:  Free Advice and the Vaccine Controversy” or “Reply to a Disgruntled Reader“.  

Or you might like (language alert!) this post by Jillsmo:  “Autism and Vaccines: My Opinion”.

Or even this post by From the Inside Looking In:  “Anti-That-Kind-of-Parent”.

72 thoughts on “Silencing Ourselves- A Plea for Civility in the ASD Community

  1. Dawn Kirkpatrick

    Brava! Very well said. I also despair that some folks are trying to make autism discussion politically correct. Instead, let’s practice love and tolerance and help each other out. These are children’s lives we are talking about.

  2. Emma Audsley

    As a mother to one son who lives with autism, yes I use that word, & another son being assessed for it too along with ADD, I’m saddened by reading the comments in written by people who are filled with hate.
    Any parent, or carer, has the right to look into the different sides of help offered. I’ve used sign-language & the PECs system to help my eldest learn how to communicate & it’s worked brilliantly for him. But every child is different. You need to try different approaches to try & find the path through to helping your child.
    I’m glad this blog is here to help & support by showing by example.

  3. Stephanie

    So true! I love this post. I wish more people would realize that we’re all in this together and each of us are in different stages of discovery, trying new things and just wanting to do what’s right for our child.

  4. Katie

    Excellent blog. My son was recently diagnosed and I’m new to the online ASD community. I am a lurker for the very reasons you state. There is excellent information out there but I’m afraid of getting attacked for asking the wrong kinds of questions or accidentally insulting someone.

    1. momof2cubs

      Hi Katie. :) Have you found any pages on Facebook on Autism yet? I like Autism Speaks, there are a lot of supportive people there. They have “liked” a long list of helpful pages too, that you can check out. And of course, Flappiness Is. 😉 My son is 4 and was diagnosed by our school district and is in his second year of preschool. It was a struggle for me to figure stuff out. I hadn’t dealt with this before and the school really helped. I hope you have a good support system too. :) Can I ask, how old is your son?

      1. Sheogorath

        Please don’t recommend Autism $peaks anymore. They don’t want to help us, they just want to get rid of us through eugenics. The prrof is in the fact that the lion’s share of the money they take in goes on wages and research while not 5% of it goes towards those they claim to be helping. The evidence can be found on their own website.

  5. javinsmama

    Love, love, love. I agree with you 100%!! It is so sad to see the attacks on each other.

    I long to have a sense of what is “real” for my life and and connecting with others about what I go through as special needs mom. When I find blogs regarding autism, or special needs in general, I latch on because finally you get to meet other parents that KNOW. And when I see nastiness fly within our small community, it really saddens me. I don’t agree with everyone’s methods–because it doesn’t work for MY SON–but I always ask questions. “Why did you decide to go this route?” “What source did you get your info from?” “How is it working out for you?” “Tell me more about it” because we are always evolving, learning and growing and just because it doesn’t fit for us RIGHT NOW doesn’t mean it won’t fit for us later. And just because it doesn’t work for MY SON doesn’t mean that it doesn’t work for you and your child. It’s about getting all the facts and making the best decision you can for your child.

    We spout off constantly that we need awareness and acceptance and yet we don’t always show it to each other. This isn’t all the time and for the most part, I adore our community –but the times where parents are attacked for their opinions deeply disturbs me and I’m glad to see that it’s not just me that sees it. Thank you for standing up and saying something. I’m standing next to you in agreement. We deserve to be accepted for who we are (parents without a manual trying to make it through this adventure with our special kiddos) and we should be the first to accept others, even if their opinions aren’t the same as ours, and make a vow not to bully each other.

  6. onepieceofthepuzzle

    I love reading your blog – your thoughts are so well-written – so true, the majority of us are all just trying to do the best for our kids and our families and there is such a lack of help from agencies that the best way to find information is to feel out the community of families who are dealing with it – no one should be attacked or feel threatened by asking questions.

  7. momof2cubs

    Great post! :) We have a 4 year old son with Autism, and we are doing what we have to, to get help for him. No one is going to tell me our choices are stupid. Its hard enough to have a relative say negative stuff. (MIL) Now we have strangers on blogs etc being negative and not supportive. We just have to be strong in our beliefs and not let them get under our skin. Its great to talk about our experiences! It helps us relieve stress and connect with caring people. Thank you! :)

  8. Monesha

    The debates can be endless ( and exhausting). I was once trashed because I don’t believe that vaccinations caused my daughter’s speech delay. I wasn’t saying that other children are not affected, just that my child wasn’t. (sigh). I hope that we can come together and realize that we do not need to set each other further apart. I love reading your blog because you give a real insight to the struggle today. Thanks

  9. Marcia Clodfelter Cross

    Maturity begins when we’re content to feel we’re right about something without the necessity to prove someone wrong. This applies to everything. How much more important it is when dealing with our children’s lives that we not reduce ourselves to obsessed fanatics like those who argue over sports teams, political parties, brands of cars and any number of things which are subjective.

  10. Elizabeth Hewatt

    I absolutely agree with you. My daughter is almost 12, and is very severely affected by autism. We have been on this path for 10 years, initially we tried almost every therapy out there. Few of them helped her, but at least I know I tried. I would never begrudge another parent trying, or choosing not to try. We all have to decide what is best for our own family. I actually started a website that in part gives information about the various therapies without judgment or pressure to try or not try any of them. One reason I started it was because I hated the fact that when you search any therapy it is hard to separate fact from propaganda.

  11. Lorilei Dreibelbis

    I have to say I agree about parents feeling silenced, and even more about how the discussion makes the whole community colored as raving mad lunatics to “professionals”.. i have been told by my school officials that the “research” i am doing and finding is fanatical in nature, and created by the minority of parents who have “unrealistic” demands…. where as I am seeing that there is a MAJORITY of parents who are grabbing at straws because what exists is SIMPLY NOT SUFFICIENT, is NOT in the best interest of MY child, so I am looking for what other options have been explored. It has been a SERIOUS hurdle in my negotiations on IEP & accomodations. Granted teh school is clearly trying to defend itself financially (extra cost of personne & materials) and emotionally (our people are really trying), but it legitamates the unspoken expectation in the educational profession that an invloved parent is a fantical, lunatic, unrealistic parent who does not know their kid as well as the “professionals” do and who is to be patronized throughout the IEP process. If we, the parents, expect the “professionals” to see and treat us as the peers we are, then we need to act professionally. DOn’t get me wrong…. I hav ecried in IEp meetings, I have begged for them to take a better look at what my kid does or is, and I have now removed him from public school because it is just NOT the right fit for my son, but this has all happened withe th me being characterized as being anti-social and unrealistic…. It does NOT have to be that way.

  12. Tiffany Mullings

    Thank you for saying what I have been feeling “silenced” about for some time now. I am not naturally a demure person, but this is such a hot topic that I have felt the need to shut myself up! This is such a well-written post! I will be sharing it like wildfire!!!

    1. Jennifer Lee Higgs

      I know Tiffany. I don’t think I’ve shut myself up but I do know that it seems like every time I turn around, I’m being blasted by moms of autistic children and moms of neuro-typicals. One thing I want to point out is that EVERYONE is different not just the ones we love with autism. No two persons have EVER been made alike so when we say no two people with autism are alike & therefore require different approaches; that should be readily accepted! B/c scientifically that’s the way it is in the ‘normal world’. A diet may work for me but not for you. So, do u shot me down b/c it’s working for me or do you just move on to something that works for u? Sometimes the solution to all the added drama is so ez it makes me wanna post a huge sign that says DUH!

      Oh, and I shared this on my page and on a autism support group I’m a part of. 😉

  13. Ann Burt

    As always, well said. As a parent who has been in the trenches for 21 years now, I have heard and witnessed many many attacks, mostly by the anti-vax/McCarthy crowd. Speaking for myself I know I have lost patience too often. But – everyone of us needs to remember we are all just trying to do the best for our kids. This is no different from conversations that are political or religious. People are people. The media feeds the frenzy, people shout down their opposition, meanwhile most of us are just trying our best every day to do the right thing. People need to fully disclose what they’re espousing. “Gee, this therapy isn’t fully studied yet, but it helped my kid.” If it doesn’t work move for you move on. And most of all, we – as parents – need to get really thick skinned. Most people are not trying to insult or mislead you. Choose your battles. Be kind to the well-intentioned. Ignore the ignorant. Have a glass of wine before bed. Ohmmmmmm . . . .

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Be kind to the well-intentioned. What wise and generous words. That’s what I try to live by, truly. When people mean no harm yet annoy me, I just try to inform them in whatever way I can without hurting their feelings. It serves no purpose and furthers no discussion to do so. And, sometimes, I just have to remember that I don’t need to prove I’m right – even when I know I am. :)

  14. Sandra

    BRAVO! I run across too many parents attacking one another because of different points of view. Our children are unique so the ways we use to better their lives should be unique as well.

  15. ScouterKat

    Once again, you give words to my feelings. Thank you!

    Every child with ASD is a puzzle all their own and each needs their own key for the solution. It’s frustrating when others who are looking for their child’s key think that they have found what should work for all of our children. Those of you who are new to this journey, I wish you all the strength, courage and confidence you will need to face others, but more importantly, I wish you all compassion and humility as well. I’ve been on this journey for 8 years now and I’m stronger and more humble, but I still have so far to go.

    At the store today, there was a young man with autism with his mother. I wanted so badly to let the mother know that I understood what it’s like to be there with the stares and the frustrations. To feel hyper-vigilant to protect herself and her child from the unknown of other people’s response to her and her son. And it is always unknown. I have had people show us the greatest kindness, the great ignorance and the greatest hatred. And because we never know which of these we’re going to get, we are always on guard. Today, this woman got stares from others and a knowing smile of understanding from me. As I left, I felt guilty that I hadn’t given her more.

    Unfortunately, if that were a store full of shoppers from the ASD community, she’d probably need to be more on guard. How sad that we as a community have driven our own members to silence through guilt, shaming, insults and hatred. How can we expect tolerance from others when we cannot practice it among ourselves?

    I’m just happy to every so often find another kindred spirit and a safe place like this. Thank you so much for giving the silent a voice in your blog.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thank you so much. You share the feelings that a lot of people have. I, too, wish there was a way to know who wants to be reached out to in public and who doesn’t.

      Thanks so much for your kind encouragement. :)

  16. Holly

    I am lucky that my child has Down syndrome and the Ds community is extremely supportive and friendly to questions or dissenting opinions. ….BUT….it is a clearer diagnosis. A clear cause, clear symptoms, and fairly clear therapies that help or don’t help. Autism, not so much.

    I work for my state’s Early Intervention and see the kind of behavior you are talking about. It really saddens me. I have tons of books in my office that present different therapies, ideas, theories, etc. These books are available for the parents to read, consider, try, give back in a hurry if what is written there makes their toes curl, whatever. Unfortunately, plenty moms wrinkle their noses at a book and get angry that I have it. Hey now, having it is not necessarily approving it, I just want a balanced, comprehensive library for any parent that wants to read. Knowledge and research. There is nothing wrong with knowledge and research.

  17. Kallie

    Well said. I totally agree. I also think it’s important to be choosy about where we are seeking information, help, advice, and support. Too often online groups of people who don’t even know each other become clique-like, ganging up on those who dare ask a question that doesn’t fit with their beliefs or agenda. Additionally, it has been my experience that while there are many worthwhile support groups, often times support group is a loose term in that it is a bunch of angry parents sitting around bitching and finding fault with those who think or act differently than they do. I have found it best to stay off of many of the boards, and stick to autism speaks, blogs such as this, and sites such as Families for Effective Autism Treatment (feat). I am in in WA and our local feat chapter is an awesome place to ask questions, get advice, etc. This link, http://feat.org/ , is for the california chapter, but if you scroll down on the far left you can find links for other chapters in other states. I’ve also found success and no judgement from a great group of local ladies via a facebook page. While the title says Aspergers and they are local, we have several families who are not local and whose little ones have Autism, such as my son. Check that out here – http://www.facebook.com/#!/groups/183590391701498/ – it is a closed group, but just ask to join and they’ll add you for sure!

  18. The Domestic Goddess

    It’s like the autism mommy wars, far worse than the usual mommy wars. You know what? We are all in this together, or should be. Support each other, don’t criticize or negate feelings.i may not agree with you do and you may not agree with what I do, but we are all trying to help our children and we are all trying to do what we feel is best.

  19. Jennifer Lee Higgs

    I just found this blog off of A4wcsn FB page and I love it! I enjoyed reading what you wrote – you are very well spoken and have no qualms with putting it all out there. Thank you and God Bless U! I look forward to reading more of your articles….BTW, I am the mom to a 14 yr old boy on the Autism Spectrum with lots of co-morbidities.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks for stopping in and sharing. Putting it all out there is therapeutic for me. But I hate it when I see people not ready to do battle with autism extremists get trounced when reaching out for help or simple understanding. I guess the teacher is me hates a bully. And we’ve got a lot of them in ASD.

  20. Storm Dweller

    Thank you. Thank you. Thank you. Some of the worst judgement I have suffered as a parent has not been at the hands of those unfamiliar with Autism… you know… the ones that say, “I would NEVER allow my child to act like that.” It has been other Autism parents who are convinced that I am neglecting my child because I do not buy into every possible therapy available. Expense, energy, time… all of those things are such precious commodities to my family, and chasing down every possible therapy and treatment eats those away. They don’t work for my family, but I am all too happy if they work for someone else’s.

    So I select the therapies and treatments that address my child’s particular needs. Right now learning manners and safe proximity to mom in a grocery store is the current life challenge. So we are working on those two things while mom is trying to divide attention beween her, her siblings, and the task of shopping. To this point I have avoided working on that with her because we have had other life skill issues to work on, most of which were directed at getting her academically on track. I’ve had a million and one things suggested to me the GFCF diet, melatonin (which surprisingly ended up being disastrous,) equine therapy, vision therapy, water therapy, a service animal (or no that won’t work because then she will only ever interact with the dog instead of learning to interact with people,) various activities to help improve motor and fine motor skills… the list goes on and on and on. People don’t want to hear me when I say that I can’t take on all of these things and leave her two siblings pushed to the side as if they don’t matter. In fact my family care coordinator is barking up my tree about finding a respite provider for me (her polite way of telling me I looked like hell the last time she saw me.) They don’t want to beleive that working 40 hours a week has as much to do with my daughter’s care and safe-keeping as exploring new, somewhat experimental (and might I add expensive) therapies. So I’ve taken on what matters. Occupational Therapy was important for Sensory issues, and her levels of tolerance have dramatically improved. We’ve taken on a family play therapy, which has helped my parenting skills and has given a platform for her to better interact with her siblings, and to give them a place to safely vent the frustrations they encounter in living with a sibling with Autism. She still sees the developmental specialist on a regular basis to continue to measure her gains, and to garner recommendations for whatever challenges may have cropped up in the between time. And she is on the state waiver program in which I am fortunate enough to be afforded a small group of professionals that come to my daughter wherever she may be, to work with her, instead of burdening me to miss time for work for even more appointments, when I already have a full plate from the typical care that three children require. I have to look at these parents sometimes and ask, “When does this become to much a of a good thing? When do we reach the point that the child is in a therapuetic environment more than they are in the outside world and they don’t ever get to be a child?” I have a child who is autistic. She gets to be first and foremost a child, and like every child she has to learn how to deal with her unique challenges in life, and how to advocate for herself in the face of those challenges.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Excellent response, Storm Dweller. If we all could afford a full-time person to manage each and every therapy suggestion, it would be great. But most of us have to work and care for other children. There is simply too much available to try it all. You go with your gut, and hope you are right.

      1. Storm Dweller

        It’s nice to know that I am not the only one (and reading here makes it painfully obvious that I’m not) that deals with these things. I’ve not gone out of my way to seek out other Autism parents in my community because of encountering the attitudes you discussed. Maybe I should try again. Surely there are at least a few other like minded individuals in my community.

    2. Jackie

      I agree with you Storm Dweller. I also have three children, one who has autism. I have found that the hardest thing is balancing therapy with financial resources, time resources and the needs of everyone in the family,including myself. I am always second guessing myself. I find the most important thing is the happiness of everyone in the family and having a “normal” family life. All children need to be loved and accepted as an unique person. I feel if you spend too much time on therapy you may be sending your child the wrong message.

      My son is 17 now and he still struggles with expressive and receptive language. However, he found something he enjoys and excels at, music. He is happy and proud of his abilities. Last year, I took him out of his social skills group which was expensive, time comsuming and in which he was not joining conversations. He now spends that extra time and money in lessons and music ensembles. He has opportunities to socialize and is making small improvements in language. And the journey continues and hopefully he will continue to make improvement even if they are small steps.

  21. Lisa

    Well said!

    I think sometimes being an autism parent is like going to war, but you have no idea who the enemy is. We just attack and hope we hit something. Occasionally we get hit by other people’s shrapnel.

      1. Lisa

        Oops, meant to give this a thumbs up, which was my lazy way of saying “By all means, quote away!” but I accidentally gave myself a thumbs up instead. I’m sort of a dork.

        1. Profile photo of FlappinessIsFlappinessIs Post author

          Do you prefer I put a last name to you or not? This is not a suggestion, mind you. Just want to give proper credit in the way it is desired. :) I will post your blog link as well, if you like.

      2. Lisa

        Just a first name is fine, thanks, but if you wanted to link to laughingthroughtears.com, that would be great. Or, you know, whatever… :-)

  22. Ashley Hughes

    To me, when you are speaking, its like you are speaking thru my soul. I am new to the autism community. My son was diagnosed in April of 2011, so not “new” but “newer”. I would never wish this on anyone, and to be rude to someone who is already struggling (me assuming this, because I struggle everyday). That is just down right hurtful. we reachout to eachother because, we are in hopes to form some sort of bond with people that are going thru the same sort of problems, stressors, life decissions that we are going thru, or maybe they can offer advice because they have already been thru it. Everyone is a critic, that is true for people who are parents/loved ones/friends of autistics/neurodiverse and neurotypical. I will tell you, I am sad that my son has autism, that doesn’t mean that I don’t love him. I love him more and more each day. I love the littlest things that he does, they make me smile so much. But I am sad for about the perception of what I thought could of been, sad about the uncertainty. I am sad, mad, angry, and just don’t want to be told that I am doing something wrong. As a parent of a little man with autism, I just want to say. That I am sure that you are all doing the best that you can do. As I am sure that any parent with an autistic child is. Becuase that is what we strive for, to do the best for our kids, to be all that they need us to be.

  23. Andrea

    Agree! If anyone had all the answers, all of us would remove the barriers to our children’s progress while retaining some of their unique quirks that make them who they are. Any parent trying to make their child’s life better is a good and loving parent, making their decisions, and sometimes unavoidable mistakes, with love.

  24. April

    Great article. I second guess myself enough. I do not need others second guessing my decisions as well. We are all just feeling our way with research and intuition. Early on I worked hard on teaching my son manners and how to respond appropriately and politely to others. He responded well and behavior problems were all but eliminated. Now at age 9, I find he is hard on himself for making mistakes and is shy to give his opinions. Did I correct one issue to only create another? It is always a struggle. Positive support from others is a lifesaver.

  25. nikwesgro

    Beautifully written. I’m fairly new to the autism community, and so far it’s been really hard to come to terms with my feelings about my son’s autism, while trying to research at the same time. It’s easy to get bombarded with so much negative information, on both sides of the debate. I tend to sway toward the neurodiversity movement because so much of what it stands for makes sense FOR MY SON. I have to remind myself constantly that the way I feel about it is just the way I feel about it, not the way it is. I will say though, I feel that part of the intensity of the neurodiversity movement stems from the fact that they are not as well known. All I knew about autism before my son was diagnosed was that it was scary and preventable and whatever else Jenny McCarthy said on Oprah. What a great disservice Oprah did that day by not showing two sides of the story. It wasn’t until I found the neurodiversity movement that I started to feel like someone understood my son, and that we were going to be alright.

  26. Cathy

    We are a society that is so quick to place labels and then completely define the person by those labels. I am an American, but that does not completely encompass who I am. I’m also a wife, mother, friend…. And… Nobobdy is just like me. I hope that my son knows first and foremost that I love him, no questions asked.

  27. rocalisa

    I’m the mother of a premature child with ADHD rather than autism, but I can totally understand what you’re saying here. We find ourselves in similar but different situations.

    But the one point I wanted to address was the point about grief and grieving. Of course, as parents, we are grieving. It doesn’t mean we don’t love our wonderful and amazing children as they are, but we need to give ourselves permission to grieve for the futures we had imagined for those children (often before we ever had any actual, real children). Whatever they are, those futures are now likely to be different from what we imagined. And our beautiful children, amazing as they are, are sometimes (maybe often) going to find that life is hard for them. We’re allowed to grieve for the loss of that imagined future.

    I don’t know that I ever sat down and actively imagined my son’s future, but I know there are things I just assumed he would get to do. I’ll do my damnest to see he gets to do them if he wants and it can be managed, but some of those assumptions just may not happen now.

    I have Chronic Fatigue Syndrome. I’ve had it for over 20 years. A wise counsellor told me that I had to grieve for the future I’d imagined I might have before I could fully embrace the future I did have. I realised that the same thing is true for the pregnancy I imagined having (my son was born at 27 weeks, so I never even looked pregnant; no big belly pics for me), and then for the childhood I imagined my son would have. He’s still having a great childhood, and I love him to pieces, but that doesn’t mean a bit of grieving wasn’t needed.

    Sorry to go on about this so long, but it’s an important issue to me. So often, people feel they can’t grieve about the obvious things like losing a loved family member. How much harder it is to grieve for things such as this when people are going to be quick to point out that your child is alive so you should be grateful. Of course we are, but it doesn’t mean there isn’t something to grieve for. It’s healthy and we need to do it.

    And sorry, I went on for yet another paragraph.

    1. ScouterKat

      Well said!!! And when we are denied our grief, we remain stuck in it’s grasp. And I loved your last paragraph the most.

  28. Suzanne

    Wow—very well written post, and oh so true. I feel lucky to have been a bit oblivious over the years to the controversy in the autism community—being too busy just trying to get through the days with my daughter Janey, who is 7 and autistic. But lately, when I’ve been doing more reading and research online, I’ve been a bit shocked at how polarized the autism world is. We are all just trying to do our best for our kids, and I can’t imagine why it should make others upset if my way is different than their way.

  29. Erin

    Well said! I’m very concerned with the lack of unity of the autism community. We should be leaning on eachother, not pushing eachother away!

  30. Linda Nelson (@LemonDropFoodie)

    close-minded individuals limit themselves intellectually. And it is our intellect, our ability to learn, that is our greatest gift we can give ourselves and our children. I have learned more from people like me who have tried various therapy routes than I have ever learned from my pediatrician.

    In regards to grief, I never grieved when I found out my son was Autistic. To be honest, I was all “grieved-out” after losing both parents the yr prior to adopting my son. For me learning about autism was a challenge I was more than ready to take on and raising my son has been a true blessing to my life. Do I worry about his future – sure I do but I also worry about my daughter too who is not developmentally delayed and excelling in school.

    The old saying ” to each their own” applies so well here. As long as the children are safe, nurtured and loved then let it go ! We are always better off when we stop pushing against things we fear (because bottom line, all those insults, jibes, etc come from fear). Lets be a bit wiser and open our eyes, ears, minds and hearts to what is going in the world of autism. Support each other because we are in this life TOGETHER!

  31. Gayle M MacConnell

    My son and I are both ASD and it can be hard to advocate for him when stuggling with it myself. Describing our needs, in words, can be hard enough without the heavy scrutiny that comes from others. We can be very “black and white” in our logic. It’s all right or all wrong without a lot of middle ground. Thank you for giving me permission to find the middle and experiment with it. I’ve been hurt by not knowing the rule book and my parents have had to muddle through with out a rule book in raising me too. We love our kids, we’re trying. We know their beautiful intricacies and unique thoughts…we do our best for them with what we’ve been given. I need to know sometimes that my “best” is worth something and that it is enough. Thank you for letting us think in color.

  32. Tracy McCain

    THANK YOU!!!! Very well said. I have a daughter with Down Syndrome, and I get so tired of hearing everyone rant about the right language. If we are ever going to promote diversity, and acceptance, it starts by not bashing people when the don’t know “the correct terms” which change from parent to parent, by the way. Let people talk, let them feel comfortable asking questions.
    I also appreciate what you said about not hiding our sorrow. I struggle with that, but I dare not admit it. It’s hard knowing that our children are different. It’s hard to parent them.
    Excellent post, excellent!

  33. Nancy

    I love your posts! They bring common sense and level-headed honesty to the table and it warms me to know that you are out there advocating for our kids and our families. Thanks for all that you do!

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  35. The Picture in My Head

    That was so beautifully written, and true. Not just about the ASD community either. It happens all the time across topics. Like you said, the approach does nothing but shut people up, and raise blood pressure. It does not work to improve anyone’s situation. Thank you for saying it so eloquently!

  36. outoutout

    Totally agree with the basic sentiments. Sadly, the Internet is a sort-of ‘wild wild-west’ when it comes to discourse – it’s been that way ever since my first foray as an impressionable teenager in the early 90s – and it’s really not right. We should treat other people with the kindness and respect that we’d like to be treated with.

    I think we need to be careful, though, that in exhorting the “can’t we all just get along??” message, we’re not sweeping legitimate issues under the rug. Because, truthfully, we don’t all want the same things and not everyone has the best of intentions. As an autistic person, I’m painfully aware of the damage that a culture of negativity can do – a culture that perhaps non-autistics don’t notice, but we do. And this needs to be addressed. The answer is not to shame people into being silent; that just forces them underground. It doesn’t change minds or hearts. We need to do that. We need to be more open-minded. We need to love and care about each other. We’re a community.

    I know, easier said than done.

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  38. yoongz

    You hit the nail on the head! Offering a word of encouragement or a link with more information does so much more than being opinionated. Every child is different – as they say different strokes for different folks… thanks for sharing…

  39. Jenny Saul-Avila

    I am very new to the ASD community, my son being diagnosed w/ PDD-NOS/Mild Autism a couple months ago. The diagnosis has caused us to constantly shift an incredible amount of our thinking of our future, of our son’s future – just a month earlier, we thought he had a developmental delay that would be resolved within a couple years – and before that, when we first started Early Intervention, we thought he’d be speaking & totally fine in a few months. The Autism diagnosis was a complete shock – we were so blind to all the signs & so incredibly grateful that we found a neurological team to recognize them better. We have grieved – we didn’t expect to spend so much time in therapy (& fighting for more E.I. therapy & insurance coverage), we didn’t expect to have to worry about the special ed program in our district – we thought he’d go to his wonderful, mainstream daycare for preschool & kindergarten (where he goes part-time now), just like his cousin did, & our concerns for our failing school district had nothing to do with worrying if he’d get the right services.
    I want to hear my little boy speak in his little boy voice – I want to hear him call me Mommy. I have a right to want that & feel sad if somehow it doesn’t happen. And I want him to be able to tell me he has an ear-ache or a tummyache & that’s why he’s having a meltdown – and not have to go to a doctor & hospital to have him examined & x-rayed to know what’s going on b/c he cannot tell me.
    Since our journey began this past autumn when our son had his first IFSP, when Autism wasn’t even a thought to us, we’ve changed our minds on what might & what might not work for him b/c he is always changing, b/c we are always learning. A few months ago, Occupational Therapy seemed pointless & not at all something we needed – now, sensory issues seem to be growing & maybe we DO need it. A couple months ago, when learning more about the special ed pre-school program in our district, I thought, he doesn’t need to be in the full-day Autism class – now I will fight for it if they say he doesn’t meet the standard. I cried when he scored so incredibly low on tests for his first IFSP – now, he can test low – fine, then he’ll get more services b/c he does need them, no matter what the budget might be (b/c I know budget has a ton to do with it, not my son’s abilities).
    People should be able to have different opinions on what is best for their child – and be able to change their minds, on their own terms. Every child & family & bank account is different. As long as what you are doing isn’t obviously abusive – like the kind that they show on the tv news that makes everyone who isn’t a psychopath cringe & think, how do people do that?!, then do what makes your kid happy & well. And let me do the same.
    Sorry for rambling. It’s what I do. And I’m drinking a glass of red wine.

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  43. BB

    Interesting post :)

    I am an Aspergian young adult, and i am aligned with Neo-Neurodiversity – basically a less radical stream of Neurodiversity, which is more focused on actively helping people in the Autistic Community (and this community extends to not only people who are Autistic but also to who we call UnAutistic Allies- parents, partners, siblings,children and friends of Autistic people). I think that sometimes treatment is nessassary, i went though early intervention as a child, it would be wrong to say that i am the way that i am just because. however i think there needs to be transparency, strict guidelines, et cetra. also less of an emphasis on ‘normality’ or ‘neurotypicalism’, because normality and neurotypicalism is something we cant truely define- why should we aspire to be normal if we cant even figure out what normal is? treatment should be focused on giving Autistic People the means to have happy, meaningful and successful lives- not trying to ‘mould’ someone into a warped vision of so called ‘normality”. I think you understand what i am getting at.
    i think you might like this page on this blog, its quite interesting :)
    http://asdcommunity1.wordpress.com/autism-with-a-capital-a/

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