Featured Guest Blog: April Is A-Comin’

valeriefoleybraceletIf we needed any proof at all that autism is a contemporary epidemic, we just need to look at the ever growing divisions between autism parents.

I think I can safely say, very few of us had any of this in mind when we gave birth.

In recent days, I’ve had conversations with other mid-range veterans about the need for a thinking space where people who are past the initial shock, the initial grief, and the initial ‘hooray for autism’ phases can communicate openly with each other.

It’s not that those things aren’t important for people to go through, in whatever sequence makes sense to them. It’s that once you are past them (if you get past them), your tolerance for their passivity and lack of inertia (and general tone, if I’m brutally honest) starts to atrophy.

It may be because you are facing increasing amounts of serious medical crisis (as opposed to accepting that all these pesky ‘symptoms’ are ‘autism’).

It might be because life is all of a sudden getting really real (in contrast to the ‘they might grow out of it’ mentality we are all lulled into… newsflash, btw, they probably won’t and it seriouses-up fast when they don’t).

It may be because in your own temperament, within your person, as a product of your upbringing, in the wake of a lack of hugging, (insert your own reason)… you are simply not a change agent or a fan of change agent type activity.

Doesn’t matter why, to me.

These things just are, and that’s what makes human diversity.

Moreover, in autism there are people who can talk and people who can’t. People who can live independently and people who can’t. People who need regular hospital care and people who don’t. It’s a spectrum disorder.

So the idea that those who need less, actively campaign against those who need more, is not just insane, it’s got a really ugly feel to it.

In other social movements, the stay in the same placers tend to stay in the same place, and the move forwarders tend to move forwards. Makes sense. In autism, the stay in the same placers seem to need to slow down the forward momentum, and I’m buggered if I understand why. Because if you are happy with the status quo, wouldn’t you just um, live it?

We all have different stories that inform our perspectives. It’s hard for all of us.

But some of us aren’t happy with it staying hard, and so we fight for the change we think is necessary. That change is generally the right to chose a more appropriate path, medically and socially, for our kids.

I reached a point where ‘hooray for autism’ was not enough. In fact, it was embarrassing. Actually, it has become something that drives me senselessly around the house looking for sharp objects and something non-living to use them on. But that’s just me.

The point that turned me was my son’s health. It was the frightening coincidences in valeriefoleykeychaindiagnoses and conditions among the cohort of autistic kids he has grown with. It was the growing realisation of the medical reality of this condition, despite years of convincing myself otherwise. It was, scariest of all, the startlingly blankly similar reactions in a growing legion of doctors who had no answers for us.

Actually, I lie. They had one answer, ‘It’s just autism.’

I would read stories about really sick kids, from autism parents elsewhere, and I’d thought, ‘Wow, that must be awful.’ I’d seen similar patterns of crisis in overseas stories and thought, ‘Gosh, I’m so grateful that’s not what we are dealing with.’ And in the back of my head, I’m thinking, I hope that problem with pooping isn’t more serious than they say… I hope that ‘freak’ auto immune attack that paralysed him wasn’t related to anything else… I hope those staring spells and tremors don’t mean anything.

It was, and it is and they do.

If they (the nagging fears) don’t mean anything bigger for your child (or you don’t have them at all), then I think you are very very fortunate. And I’m very happy for you.

But here’s the important thing.

Your personal experience contributes to the massive growing pool of autism experience. It is not indicative of everyone who shares the experience of autism. The reality of your experience does not negate the integrity or validity of anyone else’s experience.

And yet, by virtue of the diagnosis our children share, we spend a massive amount of time acting as though we share the same experience.

Even more insanely, (and maybe because doing less is generally more attractive than doing more), we use mindless inspirational posters to throw shade over the seriousness of the condition. We place ‘love’ and ‘acceptance’ on one side of the scale and the demand for medical respect for sick children on the other.

So here’s what I’d like to see us talk about in April.

Count your blessings if autism is something to celebrate in your lives.

Then, open your mind to the fact that it shouldn’t be. Stick with this. Listen, even if your guts are churning. You don’t have to change your mind. It’s your mind.

All of us love our children. All of us accept our children. These things are not in question.

Here is what is in question, for me.

Is autism a random act of fate, genetic or otherwise? Or, is it something we all play a role in, like say diabetes, allergies, asthma, cancer? Yup, I went there. Cancer and autism in the same sentence. I question whether our choices, lifestyle, medical advice played a role in causing and exacerbating this condition in our son, and I question whether our societal choices play a role in causing and exacerbating this condition in a generation of kids. I don’t have all the answers, but I gain a lot from the search for them.

Does that make me love and accept my child any less?

I’m actually not going to answer my own stupid question, because it’s so damned ridiculous. What I will happily admit is that I was sucked in mightily by a passive acceptance manifesto for way too long. I promoted the ‘there’s nothing wrong with Billy and everything wrong with the world that judges him’ for a long time. And in that time, my son got sicker and sicker. If you want to follow that journey in painful (and sometimes witty) relief, download it for free here.

But that’s my journey, and everyone’s journey is different.

How is it I can say that, and yet others feel happy telling me my son’s story is (somehow, mysteriously and illogically) a random unfortunate series of events, and I am inventing logical connections because I have Munchausens or some other invented condition and so do all my crazy imaginary friends..?

As April approaches, I am bracing myself for a barrage of nonsense.

I am happy to report that my chosen perspective on autism advocacy is being presented now more than ever before on the information super highway. I am inspired and affirmed by the rigor and passion of the Thinking Mom’s Revolution. I am informed and challenged by Age of Autism. I am calmed and educated by Autism One. If there’s a fence, I choose to stand on their side. Do I agree with everything they say? No. Do I agree with everything anyone says? No. Does it stop me confidently standing on this side? No way.

If you identify on the other side, the ‘I wouldn’t trade my autistic kid for anything’ (whatever that means) side, it’s all good. I know you have a lot on your plate, and it’s not easy, and I’m guessing there’s a lot of comfort and focus in your side (as there is in mine).

Enjoy it.

And then, back off my turf.

It is hard enough to convince the actual doctors we see in our actual days that autism is not a good enough explanation for our son’s medical issues, or that adult doses of medication is not a good enough long term solution. We need change in this realm. If you do not, awesome, it’s no skin off your nose if I fight for it, so leave me to it.

Leave us to it. You have what you need. We are not competing.

It is hard enough to convince teachers and educational administrators that children with autism who are mainstreamed need complex and expensive support in the classroom. There is no other appropriate place for many of these kids, and they have to be in some kind of educational setting because that’s the law. So enjoy the fact that you need less, and support the fight for the kids who need more.

Or, even less confronting, just let the people who have to fight fight, and you do what you do.

The nonsense idea that just because your experience of autism means you see no need for change, then no-one’s experience of autism reflects that need, is just… immature. Politically and socially immature.

There is so much to question, so much to consider, so much to try… so much that can be done.

As much as I’d like to sit back and hum along to Simon & Garfunkel next month, I’ve got work to do.

~Valerie Foley



Valerie Foley is an Australian writer. She writes children’s television, books about autism, blogs, songs, theatre… anything, really, that encourages people of all ages to think broadly and bravely. Her son Billy is a beautiful child with a very large medical file. She’d like to ensure that as many kids as possible avoid that fate. Her blog www.infoaboutautism.com swims along in the wake of the brave pioneers of the autism community who have had the courage to ask that people think critically about autism. 

Here’s the place where you can download the car crash journey from ‘hooray for autism’ to… stand up and fight.  It’s free. And long. Three years of watching your son be mishandled by the world’ll make a gal write a lot.


Pin It
This entry was posted in Blogs by Thinking Moms' Revolution, Featured Guest Blog. Bookmark the permalink.

10 Responses to Featured Guest Blog: April Is A-Comin’

  1. Allie says:

    A-freaking-men, Valerie!!

  2. Sylvia says:

    Thank you Valerie. Beautifully written. I read your piece on the heals of a piece in HuffPo (http://www.huffingtonpost.com/gregory-g-allen/fear-of-autism_b_2918238.html) that troubled me. I can no linger abice by those that want to “celebrate difference and diversity” without mentioning, what is for many, the profound tragedy of autism–lost childhoods, lost relationships, inability to communicate, toilet oneself, live an independent life, be free from pain, the list goes on and on. To be labelled “xenophobic” b/c one acknowledges the tragic circumstances of those farther along on the spectrum is infuriating. I think, perhaps, I may be having some informed arguments in April. I don’t want to celebrate tragedy. I want to fight for children to not have to struggle against terrible odds.

  3. shelley white says:

    i love this because its a comfort to have someone else who thinks like me , like us ….you see i dont go a day aweek without telling my story … and finding out that im talking to someone who either has an autistic child or knows someone who has, whether it be family or not ……………i have to make a very valid point here when ever i open my mouth, seriously , why is it so hard to believe that its not an epidemic, well along with it being the biggest man made fuck up to the health of all our children , and the fact that its big buisness to keep disabling generations of children …. mine included .. you see the reason is crystal clear to the new parents and non parents who fail to believe there future children , and generation are being damaged by vaccines!!!!! LOOK , TAKE A GOOD LONG HARD LOOK ….. and with no disrespect … to a child thats physically disabled its merely making a valid point , if you you was to gather all the vaccine damaged children with ASD and .. i have to point out that i always always refer to my son as being vaccine damaged with autistic traits on the very severe end you know non verbal , severe sensory processing dissorder, social communication dissorder , dependent on me for life still as yet at 7 yrs old not toilet trained , bowel and gut issues the list is endless … but back to my LONG HARD LOOK … he looks normal NORMAL !!! AND THIS IS WHY SO MANY PEOPLE REFUSE TO BELIEVE and why so many sit on the fence , and why new parents say its okay im sorry for your son , but it doesnt mean its going to happen to me , and go vaccinate anyway , you see our normal looking children that have been damaged are NOT DISFIGURED ! SITTING IN WHEEL CHAIRS , OR IN A CABBAGE LIKE STATE , and i know that there are some that are or ones that didnt make it , but our percentage alarming percentage of children on the spectrum or with damage of some discription , look normal on the outside , im not talking about behaviour here im talking about the visual , that would immediately send the biggest alarm bell out across the world , this is one of the never ending relentless fights we have on our hands trying to convince the rest that the epidemic is real and someone needs to stop it fast , and reconize that our children that are already damaged, need all the help we can get on what ever path we choose for our damaged children babies adults , and we need support and fiancial help for this is life long , and it has to stop , …… thankyou for reading this because ive been kicked off and blocked from many autistic sites with the accepting parents that think its genetics !!!!!!!! one word for this BULLSHIT !!!! AND ANOTHER IS BRAINWASHED!!! into possibly thinking it is , i WILL NEVER EVER stop trying to recover my son , without meds !!! its fucking meds that put my son in the state he is , it certainly isnt genetics and certainly wont be meds that recover him …. thats my only light at the end of this LONG DARK TUNNEL !! sorry everyone its my day to rant take it as you will and im sure for a change most will agree , by the way … i choose to have a name for what ever day or week suits so today its octupuss mom who forever has a broom stuck firmly up her backside sweeping the floor whilst multitasking with my many arms and hands sigh !! i wish there was a homeopathic remedy for such moments which seems to be constantly recently 🙂 shell x

  4. LizP says:

    In my mind, I feel our struggle is a lot like the LGBT struggle for marriage parity – on one side are zealots who believe only they are entitled to the rights and privileges this sacred union endows because they are “right,” and on the other side stands an army of good, kind, loving, committed couples whose only desire is to be married in the eyes of the Law. In no way does the marriage of a couple in the LGBT community lessen the marriage in the homophobic heterosexual community; any more than the marriage of a chinese heterosexual couple or a jewish heterosexual couple lessens a baptist heterosexual marriage or a caucasian heterosexual marriage; your marriage is whatever you make it. In the Autism world, people who are mildly affected or moderately affected but able to participate in the mainstream do not seem to understand that my daughter’s severe Autism does not lessen their struggles nor invalidate their diagnosis, and her treatment and progress takes nothing away from their journey. Each person in this world must walk his own path, though he has a choice; to lend a hand to fellow travelers who have fallen, kick them while they are down, or simply look the other way and walk right on past – in the world of Ausim, there are already too many “neurotypical” bullies, why would those who are blessed with the ability to speak-up simply walk on by, or worse, kick us as they pass?!

  5. This is a wonderful post, and so right. I do agree with the sentiments – completely. Sadly, though, there is one problem. It’s that too many of the folk on the mild end of autism don’t want to accept that your child isn’t okay. They don’t want to accept that something caused this.

    They don’t want to accept it because it implies that there’s something wrong with them.

    That’s why this plea won’t go anywhere. There truly is a divide, and sadly, those on the other said are not going to let go. For too many, their egos are too deeply involved.

  6. Em Walker says:

    Brilliant! Thanks for saying this. There was just a “discussion” the other day in a group that I belong to. One side demeaning another and several of us said to each his own. I have always said, and always will say, that I will not demean another’s choice in raising their autistic child but, leave me to my side of the fence.

    Your post was exactly where we (my family and I) were, exactly how we got here today. Thank you for being so articulate in how to put this out there.

  7. Fabulous post, Valerie. I always love reading your words.

  8. You have many good ideas. I really like the idea of a thinking place. I wish there was less arguing as well. As an independent living and full time working adult who has diagnosed at age 5 with pdd-nos, back when autism was rare, I am shocked by much of what goes on in the autism community now.

  9. Jean Ghantous says:

    This so resonates with me and my family. My daughter just relapsed with leukemia and we are in the middle of intense biomedical treatment with my youngest to try to heal his gut, chelate metals and give him a chance to be “normal”. I often feel guilty in the autism community to want that normalcy, to be angry that he is medically damaged and it takes heroic effort on our part to help him. Meanwhile my daughter gets top medical care paid for by insurance and there is no shame in exclaiming that cancer sucks, that we are going to fight her diagnosis tooth and nail. Where is the outrage for my son? Where are the doctors? Where is the financial help, the lab work, the specialists?

    Thank you.

  10. Here’s the place where you can download the car crash journey from ‘hooray for autism’ to… stand up and fight.
    It’s free. And long. Three years of watching your son be mishandled by the world’ll make a gal write a lot.

Leave a Reply

Your email address will not be published. Required fields are marked *