Blue Day/Month/Minute...

I posted this on Facebook, and I thought it was worth posting here, through the hoo-ha and hoopla of Autism Awareness time.

My wish for Autism Awareness Day/Month/Minute.

I'd like every university, every drug company, every school, every doctor, every therapist in the autism industry to stand up and say:

'This is what I found out about autism this year, and here's how I'm trying to turn the tide around. I'm trying to find out as much as I can. I'm investing money in the search for knowledge. Here's what I commit to doing between now and next April, and you can hold me to account.'

I want one prominent, funded researcher, just one, to say we are trying to work out why so many kids are developing this condition. And when we find out, we will share our knowledge with you, so we can all protect your family and families to come.

I want all those people profiting from autism, to have to live with the accountability and vulnerability and fear of the future that we do.

Then I'll light up in fucking polka dots.

 

Apologies if the swearing offends. 

Unsolicited advice...

Billy and I spent today doing a favour for his psychologist. We sat in front of a team of people being trained (by Billy's psych) and went through the ADI-R, the parent component of the ADOS - the most popular diagnostic tool used here.

We've done it before, both of us (Billy generally does the ADOS, though his version of the ADI-R would be instructive), and each time it's interesting.

For me, it brings me right back to Billy's first diagnosis... and it reminds me how green we were, how vulnerable we were, how driven by a potent combination of love and concern we were.

So, with April, Autism Awareness Month, looming, I thought it was time for me to give myself some advice. In the spirit of the counseling I've been going through, I will speak directly to my self five years ago, and if the things I say have relevance to anyone else, then so be it.

1. Do not listen to anyone who says 'wait and see'
Those people are trying to save themselves or someone else time and money. They do not have your childs' best interests at heart even if they think they do. I'm not saying they are evil, just that they are not you.
The longer you wait, the more you will see.
The less time you wait, the more time you will have taking the autism bull by the horns and wrestling it. And no, a lack of desire to wrestle bull is not an asset in this game. You will be doing it for a long time, the earlier you start, the more familiar you will become with the horns and the smelly hair.

2. Do not normalise what you know is not 'normal'.
Insane competence with technology when you are two and not talking is a great thing.
It 's not, however, a sign that your child is not autistic. It is a giant, flapping, squawking, perseverating red flag. Spending trips to the park squinting sideways at fence palings, isn't eccentric. Choosing one toy to the absolute passionate exclusion of all others, is not being a good customer. Do I need to keep going, slightly younger, you?

3. Do not reject therapies or interventions based on your reaction to the person offering them.
You are creeped out by random taxi drivers or shop attendants. You have been creeped out by some fruit.
Get over yourself and listen politely to everyone. It's the right thing to do, and you should know by now that slightly creepy people still may have something to offer. You may miss out on some important information if you give in to your natural tendency to assume odd people are cyborgs. Idiot.

4. Do not listen to everyone.
Seems like I am contradicting myself, doesn't it? I promise I'm not. Stick with me, even if you think I'm being a creepy cyborg.
Autism world is factional. More than the Australian Labor Party. Believe this. Being an autism parent is like being hassled by telemarketers some days. You get told this WILL work, that IS nonsense, these people ARE criminals, this therapy IS dog training, those supplements ARE useless, that organisation IS corrupt. That's a LOT OF CRAP. Believe what your gut says to believe. It's what got you this far.
There is no absolute truth, there are a lot of informed opinions. Take it all in, and keep breathing. Acknowledge that people's passionate advocacy comes from their lived experience and vested interests. These are wonderful things, but they are not gospel. Or maybe they are gospel (as I understand it) - ie. stories designed to convey a message. That's the best I can offer you. Reject nothing, accept nothing. Join the community, don't be intimidated by the dogma.

4.5 Do not reject technology because people in conservative clothing say autism is caused by watching too much YouTube or TV.
That is insane and ridiculous and you are stupid for even listening.
In fact, you will learn technology is your lifelong, unconditional friend and, generally speaking, people in conservative clothing are not. Be nice to them, but sing a happy song in your head while they are talking.

5. Do believe in the power of love.
Billy's favourite version of this song comes from a YouTube Jurassic Park mash up, so I have heard it a lot. That may be why I'm saying it, but I think there's more to it.
Love is what will carry you over shark infested swamps and through endless therapy session. Love is what will get you through watching your child struggle, and feeling like your child is hurting you (he isn't, FWIW, at least not consciously). Love is what will keep your head above water, and your underpants the right way round (I warn you some days, you will not remember which way is up). And you are going to need the power of love for you to accept what's coming next.

6. Do acknowledge it might not go away.
You do not want to accept this one, but believe me, accepting it will save you. Not accepting it will eat you alive.
You may be one of the few families who grow past the diagnosis. You may be one of the families who benefit hugely from biomed and therapy. You may be blessed by the giant flying donkey of truth who magically sucks the autism away. All these things are possible. What is probably, statistically (at least for now, and here's hoping it will change significantly really soon) probable, is that the autism will still be there (maybe looking slightly different) in the future. Have faith in therapy and interventions, but do not be fooled into thinking you (or god forbid, your child) is a failure if the autism doesn't magically disappear. A quick face-palm from six years in the future, he's awesome, and he's still autistic. I do not want to stop you from doing the very best you can, and you will come to believe that 'recovery' is possible, just not probable. Shoot for the stars and know that the stratosphere isn't a bad place either.

7. Do purchase some boxing gloves (or your fighting equipment of choice)
The world will not bow to you or your child. It is not in the interests of many people to prioritise the well being of your child. This will surprise you, a lot. So... do not be blindsided by it. Come out swinging. Well, maybe not swinging, but being massively articulate and well-read. Keep yourself credible, do not let your standards slip, keep your friends close, and your enemies much much much closer. Do not let people off the hook. Document everything. Don't ever accept statements like 'that's just the way it is' or 'that's not the way we do it'. Know that having a child with a disability automatically makes you an advocate. That's just the way it is. Oh... hang on...

8. Do back yourself.
You will not always be right, so you may as well get your motivation straight. You are here, right now, for your child. You will be attached to him for a long time, longer than you anticipated. Don't try to hide him or his disability. Do try to understand him and his disability as much as you can. You will like yourself a lot more in the future if you do. To be honest, you are going to need to get used to the acceptance, because there's a better than good chance that he will stick out more, not less as time goes on. You will need all your reserves to resist the desire to slap down giggling kids and gaping general public.

9. And lastly...
Autism is as varied as the flowers in a really awesome flower shop. Stand proud among the colours, but do not use the difference in petal shape, height or perfume as a reason to deny the awesomeness of your child.

He is what and who he is, and being like or unlike his ASD peers, is as irrelevant as his likeness to his NT peers. Don't rely on nonsense arguments about how he's not like other ASD kids, as proof that he will be 'OK'. He is OK. He is also autistic. Prepare yourself for a mosaic of chronic medical conditions (or not), obvious socially inconvenient habits (or not), massive changes to the way you live your life (or not).

Know that you will do the best you possibly can every day. It might not be perfect or what you planned, or what you want to do... but suck it up. Good days follow bad days, and vice versa. Do not cut yourself a break, but do cut yourself some slack. It's going to be a bumpy ride.

Your son is the same miracle he was when all you knew of him was a double line on a white plastic stick. He will be the best teacher you ever had. He will inspire, surprise and thrill you.

He will also make you watch more Spongebob than you ever, ever want to. Unfortunately, that will suck like nothing else. That's the bad news.

The numbers game...

When I was Billy's age, I got the impression all adults were a bit... unfair. It seemed like they had the keys to the kingdom and I was on the wrong side of the gate.

It was the 70s, and adults seemed to rule the world. I may be remembering an episode of The Rockford Files and not my actual life, but there seemed to be a bunch of good natured socialisation going on wherever I looked. People's parents in synthetic walk shorts and nylon kaftans smoking and drinking and talking about stuff that seemed important but inaccessible.

They made me want to be a grown up. Not because of their smoking and drinking, or their kaftans, but because they seemed to be onto something life-wise that I was denied, while I wrote stories and wore a school uniform. They seemed in control, to me. In a slightly unhealthy, unsanitary, petrochemically kind of way.

So, it has surprised me slightly to learn that they must also have been complete arseholes.

Why? 

Well, if the autism skeptics (like climate change skeptics, but even better at ignoring the bleeding obvious)  are correct, then grown ups in the 70s were really good at ignoring their kids obvious struggles and choosing to keep on smoking.

The rapid acceleration in autism diagnoses, which will be 'refreshed' by the CDC any day now, proves that my friends' parents (and maybe even mine) were monsters. 

The skeptics will tell you that autistic people have been around forever. That there is no actual increase in kids diagnosed, we just live in a more aware age. Thanks to cleverer doctors, eagle eyed and sensitive teachers and overly anxious helicopter Gen X parents, we are finding autism and naming it such, much more easily these days. 

We should feel lucky to have these clever folk around us, to feed our ever growing obsession with Google Doctoring, and guide us to the safe arms of the medical community. After all, they didn't exist for our poor parents. All they had was cigarettes and pool parties.

We should feel bad for our poor deluded parents generation, and perhaps for the parents before them too. They didn't have people outside of their own homes and hearts to TELL them there was a problem with their children. After all, it's not like they could work it out for themselves, they were too busy getting bombed and driving home afterwards. Probably not wearing seat belts (just another reason to believe they were all monsters).

I am going to go back to my home town, and drive around to all my friends parents and tell them they should be ashamed of themselves. I'm going to tell them it's reprehensible to ignore your child when they can't communicate effectively, when they can't handle the world, when they are clearly sick. I'm going to give them back all the soft drinks and games of Twister and bonfires they provided for me. I don't want their stinking good memories. I want them to stand up, like I've had to and face their kids issues. Cos, they had them. They must have, because so many of my friends kids do. So many of my family's kids do. 

I know those parents, even my parents didn't have the benefit of today's highly evolved medical and educational professionals, but seriously, if 1 in 100 (give or take) kids have always had autism then someone was ignoring someone's needs. Too many martinis, not enough attention to detail. Too many Sobranies and Silk Cuts, not enough good responsible well trained teachers and doctors. 

Parents in the past were all idiots. Right?

Wrong. So completely wrong, I want to go back and delete all that nonsense (except I like the party scenes, a lot).

I'm sure there were crap parents in the past, and I am sure there will be crap parents in the future. I'm sure there are crap parents among the autism community right now. I have way too many truly crap moments, when all I want is to be one of the characters in Reality Bites, and smoke cigarettes on funky looking rooftops.

The roots of autism are not principally in parenting styles. They are not in a teacher's vigilance. They are not in doctors' offices.

The insidious tendrils of autism lie in the perceptual space between the skin of a mother and her non-sleeping baby. They wrap themselves around the sobs of a dysregulated toddler and the father trying to make a graceful exit from the scrutiny of the playground. They reach out and stop a tiny hand from waving at grandma, a tiny finger from pointing at the airplane, a tiny mouth from forming words.

As the spidery autism webs take hold, I believe there are very few parents who do not sense their stricture. Whether the tightening has been there since birth, or it grew sometime soon after, it is impossible to ignore. You can see it, you can feel it, and though you may confer with doctors and teachers, you are told (more often than not) that you are overly anxious or that you should 'wait and see'.

Autism is not rational. Autism is visceral. I do not know one autism parent who did not 'know' (in an oogedey boogedy way) that something was going on with their child. 

They did not need a heads up from a teacher. They did not need to be taken aside by a local doctor. They had their own concerns, and were (more likely than not) acting on those concerns and being brushed aside.

They looked into their kids eyes (and had them avoid looking back). They hugged their kids close (and had them either cling like a desperate koala or resist violently). They watched as their kids slept (or didn't sleep as the case may be). That's how we knew something was up.

That's how so many of us knew something was up.

I know I've said this before but I'm going to say it again.

I did most of my growing up in a pretty normal suburb, of a pretty normal city, in a pretty normal state of Australia. I do not have any older members of my family with an autism diagnosis, or impairments significant enough to be considered un-diagnosed ASD. I did not have any friends with autistic siblings/cousins/older relatives/friends. Billy is not the only autistic child among my mother's grandchildren. I have three friends (that I know of) from primary school with children on the spectrum. I have ten friends from high school (again, that I know of) with children on the spectrum. I have five friends from my professional life with kids on the spectrum.

It's anecdotal, but it's real. 

These are not the friends I have made in autism world. These are folk I knew before I knew what autism was. We did not live in some Erin Brokovich style environmental disaster zone (that we know of). We did not suffer a plague of DNA altering proportions. We were not poor, nor were we rich. We just were.

Almost everyone I have met since autism became our lives has a similar story. No autism, or minimal autism like characteristics in the family and them... whammo.

This is a generation of disability that defies the cleverness of doctors, teachers and most of us parents (see every single post in this blog for evidence of that). It is unprecedented. It is debilitating. It is life-changing. It is going to make for a hell of a next generation.

If one more person says, with a caring tone, 'Oh Billy I hate noise too. I know how you feel'... I will invite them to live with us. To see and feel what it is to switch from having a great day, to wanting your pet dog to die because he made a natural dog noise. I'll invite them to share a day with any one of my friends families - locked in to prevent escapes, bruised by their own children's' fears of haircuts and nail clippings, sleep deprived from seizure vigilance.

We are loving and devoted parents. We are not suffering from Munchausens by proxy, helicopter parenting syndrome, overly dramatic mummyness, or any other disorder invented to deflect from the tragedy that is unfolding around us all. And I don't say tragedy to make anyone feel sorry for us, or to say that anyone autistic is tragic... I say tragic because we are ignoring the seriousness of the numbers game.

There are more autistic kids than there were in the days of synthetic kaftans. There are probably fewer open-minded doctors and teachers. There are more, many many more desperate families drowning in a pool of lacking. Little proper care, little future planning, little medical acknowledgement,  little respite, little appropriate education, little political action.

And this is just my life. 

I know 100s, if not 1000s more in the same boat. Shall we all stand back and watch the ripples in the pool grow into a tsunami? It will, because the need isn't going away. It is growing, every day.

I worry for my child, and I worry for his autistic peers. I worry how they will live independently when they um... won't be able to. If the numbers stalled, today, we would still be looking at 1 in 100 people in supported community based care in 10 years time...? And that's just the autistic people... Now that's a prospect.

Yup, all these autistic folk have been around forever. 

Unless you believe a love of polyester is an autistic perseveration, that last sentence is a crock of french onion dip.

At Hopeful Parents...

On how chips, sprinkles and good health are trying to co-habit.

Click through if you like.

Perhaps I am a hat?

This week, I have begun talking to a counsellor.

While we are in a pretty good place, despite Billy's new health concerns, I am carrying around a bunch of unproductive feelings - wishing specific people's heads would spontaneously catch fire, wondering why doctors happily default to God's poker playing skills during medical consultations, hoping we will have one day without Spongebob in some form... that kind of thing...

Knowing that they will likely remain unrequited, I am keen to send those feelings to some faraway place and so, I have let the talk-fest begin.

In preparation for this counsellor, who seems like a smart person (and who shares the experience of having a child with autism), I have been thinking about the way autism has changed me, the way I behave and how I see the world.

1. Autism has made me weep like a baby.
Every time I see a film about autism, like this beautiful one from the BBC, a stunning achievement by an autistic person or a story about yet another near or actual tragedy, my eyes, chest and brain dissolve. I don't want to cry as much as I do. In fact, I use the tears as a kind of barometer - fewer tears = fewer hopes for spontaneous combustion incidents, generally. I definitely didn't cry this much pre-diagnosis.

If I had a tip for new players, it would be to try to manage the tears, in some non-damaging manner. People who I would not expect to be shocked by parental, child related tears (doctors, teachers, windscreen cleaners at intersections) are indeed shocked. OK, the dude at the intersection is better than the others. I should give credit where credit is due.

2. Autism has made me fight like a lion.
It is not hard to make me angry these days. There are trigger words, in fact. 'Evidence' is one of them. I used to love evidence. It appeared in episodes of Law & Order, and Agatha Christie books. It meant fact, reliability and that a solution was imminent.

Now 'evidence' is used as a weapon, more often than not. It is used to shut down discussion (there's no 'evidence' of that ever happening). It is used to deny standpoints (But where is the 'evidence'?). It is used as a universal truth, despite the fact that we all know 'evidence' (particularly the health related kind) is the product of intense, expensive, funded research. It is designed to validate a pre-determined point of examination. Funding for that validation rarely comes from uninvolved parties who are throwing cash around for the 'greater good' (as though that can be universally determined).

With an autism diagnosis, must come an acceptance that your family may well find themselves hanging out on the edges of the mainstream. Out here, 'evidence', in any kind of form is hard to come by and even harder to accept, because it rarely describes your experience.

When someone says 'evidence' to me now, no matter what words surround it, that old video of baby harp seals being clubbed starts playing in my head. I can barely think for the building growly rage.

'Evidence' is great stuff, but it's not universal, exclusive truth.

3. Autism has made me read like a person imprisoned for life with no TV and a great desire to avoid being frightened by the experience of being in prison.
I've always loved to read. The first book I ever recall purchasing was Milly, Molly, Mandy, bought at 6 years old at Heathrow Airport. We were en route, from Ireland to our new life in Australia, and I couldn't have dreamed of a more exciting escape from the food smells and fears of air travel in the 70s. Almost 40 years on, most of my purchases are on Kindle because we just can't keep carrying around so many boxes of so many paper books.

Oddly, the utopia that Joyce Lankester Brisley described in those books, is still what I'm seeking in all the words. Some quiet place where we can all be ourselves and eat mustard and watercress sandwiches. GFCF, of course.

There is never not a book on the go. There are always more to read. I read what piques my interest. I read what enrages my soul. I read 'evidence' and argument and counter argument. It's emotionally and physically exhausting, but it never ceases to amaze and inspire me. I am scared at the amount of times I find just what I needed to find in one of the three or four books I have on the go at once. Even more scary, sometimes it's in a trashy novel about living in Hollywood that I find solace. Rarely 'evidence', but often escape.

4. Autism has made me accept that 'right' is a matter of intention and context.
This is a tricky one. At the pointy end of our existence, I have to accept that the way I see the world is different in a quantum sense, to the way Billy (for example) sees the world. I have to accept that we all get our idea of right and wrong from our lived experience and the perceptions that grow from that experience. Ergo, I have to accept that what I believe is right, is not necessarily going to be what Billy (or anyone else) believes.

So, when there is a point of conflict, in relation to Billy, I am often left flummoxed as to how to help people understand whether anyone is 'right'. In the wake of the massive conflict that took place regarding Billy's education, over the last eighteen months, we are left languishing in 'right'-ness.

We were right, the opposing party was wrong. The law was very clear in that regard. But there is no reward for being right, and there is no consequence for being wrong. Those who did wrong, can continue on as before. Even though it was 'wrong'... or is it wrong, once Billy is taken out of the equation?

You see why I need a counsellor.

5. Autism has made me need a counsellor.
And a round of stiff drinks. All for me.