Ten days ago, after a lot of procrastination, discussion and false starts, Billy and I both went gluten free.
We have been told, repeatedly, by Billy's GI doctor (and his GP and his neurologist and his geneticist and a random woman who was just walking past us on the street) that there was no point in Billy being gluten free. Their reasons included a lack of serology, no evidence and gluten is so yummy why would you even think of giving it up.
Billy lives with chronic reflux and constipation. (Hate poo-talk? Stop reading now.)
Billy's poo is a curious bright orange colour and it's full of undigested food. It comes out every day, in volumes that would make a sailor blush, but he does not clear his bowel completely. He is, periodically, unable to perceive or halt the arrival of poo. He is stopped in his tracks multiple times a day with pressure and burning in his chest. His tongue is often the colour of tepid tea. His teeth are eroded by acid. He is almost 9 years old, not 90 years old and not 19 months old.
- We have medicated him (upside: makes the poo move and fixes the reflux; downside: makes him vomit bile and means he's taking drugs every day).
- We have changed his diet (we went organic, took out dairy and soy, decreased as many numbers, colours and chemicals as we could, increased the juiced/pureed/whole fruit and vegetable content, added all sorts of extra fibre, added prebiotics, probiotics, enzymes and large amounts of Omegas, increased his already insanely high intake of water).
- We have made sure his body is in constant movement (OK, so autism kind of takes care of that for us, but we encourage a variety of constant movement).
- We have engaged in behavioural intervention around toileting (timing, posture, checklists, rewards).
While the constipation definitely improved with all of these interventions, it has always remained an issue. Nothing has made it become a non issue.
Now, I really want to say that going gluten free has made the constipation disappear.
It's not gone, but ten days GF, and it's definitely improving even more.
Billy's poo (tune out and sing a song with your fingers in your ears if you are not keen on talking about poo) is no longer bright orange. It is something approximating a child sized poo. There is still the odd accident, but we are starting to see that might have something to do with food additives which we are slowly isolating (right now sorbitol seems to be the bowel devil, but it could be perfectly innocently masking some other evil).
Removing dairy and soy definitely helped, and removing gluten has definitely helped too, poo wise.
But there's more.
As we have been fighting the poo beast, we have been noticing the added benefits of the changes we have been making.
I haven't yet commissioned a peer-reviewed, independent study on any of this (though that happens so rarely in autism that I guess I don't need to mention it) but Billy is without a doubt better off.
He is generally healthier (duh).
He is sparkier and spunkier (maybe that was going to happen anyway, but it's funny and confronting all at once).
He is way less foggy generally (GF has contributed to this in particular. His happy is happier, his funny is funnier, his sad is sadder. He is way more interested and engaged in family life and life in general).
More importantly, he is NOT missing the gluten. He is accepting the change.
Now let's take a moment and realise how important that last sentence is.
Autism.... change.... acceptance.... food.... what?
It's a reverse vicious circle, in Billy's case. Where before he would demand the same foods, really struggle to change his thinking about changing foods and so keep eating those same foods... now he can change foods. How? I have no idea. But he is, and we did not think he could.
He feels better, he is better, he gets it.
In the past, we took the GF-will-make-no-difference advice of the GI quite gleefully because, quite frankly, the idea that we would have to eliminate Billy's preferred foods was inconceivable.
Well, as we chuff along happily on the GF train (minus croissants, KFC, hot cross buns and chicken nuggets) I can happily report, he is fine. He is eating other stuff (OK, there's a lot of bacon and french fries... but vegies, fruit, grains, legumes, nuts and seeds as well). It's by no means solved, but it's possible, in every possible way.
If you are, like we were, GF curious, but scared of the change... take it from me, it's worth a go.
It's worth a go. It's worth a go. It's worth a go.
From a grown up, non autistic perspective, I could murder a piece of white toast. And I apologise for my violent language, but that's how I feel. I could hunt it down, capture it, cook it, devour it and then go looking for its frightened little friends.
But, in solidarity with my little man, who is handling more than we ever thought he could... I will happily shelve my glutiniverous tendencies and eat more fruit (wine is fruit, right?)...
I'm sure there's more to be said, and I'm sure there's a heap more to learn, but for now I'm off to soak nuts and beans and search the pantry for random sorbitol.
It's worth a go, right?
Sunday, July 29, 2012
Wednesday, July 25, 2012
Why do I let this happen?
We are into the guts of Billy's CBT program now. And when I use the word guts, I use it deliberately.
The initial weeks of the program were about helping Billy understand what anxiety is, and giving him tools to handle that anxiety. It's been really effective. He gained a lot, and utilised it gleefully in his daily life.
This week we started to deal with Billy's actual anxieties, which are all specific sound related.
And, in today's session, we hurtled backwards in time.
The first time we thought something was 'going on' with Billy was when he was one month old. We took him to the supermarket, and some friends stopped us to admire our beautiful new baby. As they spoke, they crashed a trolley into the stack of trolleys near the shop's entrance. Billy stiffened like he never had before, and cried like he'd been hit. (He hadn't).
When he was 11 months old. We took Billy to a birthday party, where a young boy (ironically with Aspergers) took great delight in whooping like an old school cowboys and indians movie soundtrack. Billy, who was then and remains, the Dalai Lama, cried like he'd been crushed in a vice.
When Billy was almost two, I took him to a playgroup. Kids of the same age, ran around him. He watched with interest until two of them crashed into each other and started to cry loudly. Billy cried like he'd been knocked over.
I could recall incident after incident, but trust me that sitting in the psych's office today, and seeing him succumb to an hour's worth of pressure to handle the possibility of dog barking was like watching my child fall off a net-less trampoline in slow-mo on YouTube.
We have not followed a conventional path through autism related therapy.
We have not followed the path laid out for most families in Australia (EI, OT, ST, ABA, satellite class, mainstream school with support, mysterious loss of symptomology and speculative acceptance of the captaincy of the football team) because Billy was not comfortable on that path.
He cried when he was placed in groups of children. He got sick the more we made him spend time with large groups of children. He became intensely stressed when we forced him to pretend to be just like the NT kids.
Neither of us felt comfortable forcing him through hoops that were clearly painful. We observed other children who coped just fine. We saw some kids who had transient anxiety and 'got over it. We saw many children with impairments in communication and social skills show their discomfort with their lot by screaming, biting and tantrumming.We did not want that for our child, who was already struggling with a life threatening demyelinating condition.
So we pulled him away.
We did Sensory Integration therapy. We taught him at home while he did reduced pre-school hours. We carefully chose a small supposedly compassionate community school who we believed would protect him.
The wheels fell off slightly when that school made the choice to misinterpret Billy's stress and illness as parental neglect. It didn't take long to fix this, by lawyering up and deciding to home school.
The simple solution, to us, was to respond to our son's needs, and do things in a way that was manageable to him.
His defining impairment, a spectacular hearing sensitivity, confounded everyone until last year when an ENT did a bunch of diagnostic tests and came up with a feasible hypothesis that can't be tested until Billy's nervous system is fully grown (around 12 years old).
This year, we were convinced by Billy's psychologist (after some odd assertions from his GP, his Neurologist and a geneticist) to attempt to address Billy's sound related anxiety levels with a CBT program called Cool Kids.
So... we have arrived back at the beginning.
We are again, watching our child struggle in a truly inhuman fashion, as we are expected to accept it is a part of his journey.
By inhuman, I mean, lamb to the slaughter style experiences.
I mean, deflecting questions about what might happen, with lies about 'not being sure', for fear of him backing out altogether. I mean walking him into a room knowing that what happens in there is going to distress him beyond anything he could dream up in his worst nightmares. I mean sitting with wide eyes, pasted over with fake smizing, as my child sweats, clenches and eventually breaks down.
I am his mother. It does not feel right to do this.
He is definitely learning strategies to handle anxiety. At the same time, he is being taught that his anxiety has no rational base, and that's where the problem really lies.
On the one side, we have an ENT, with scans and audiometry and research studies detailing a condition called Cochlear Deheisence. On the other we have psychologists, with their collected wisdom about autism and anxiety.
In the middle, we have the most trusting, positive, compliant, willing child I have ever met.
This is not the first time he's been stuck in the middle. The GI says , 'It's autism' and he stands in the middle while we say 'What?'. The neuro says 'Lots of autistic kids have seizures' and we look at him say 'Why?'. The geneticist says, 'There's no reason for his autism' and we sign and say 'Where did you get the idea we were asking you that?'
It's truly like being in a dumb Hollywood movie. I want to yell at the screen... Why in heavens name are we persisting in viewing autism as a behavioral monster that requires taming?
What parallel universe are we living in where we think it is in the interests of children to force them repeatedly and without their permission beyond their boundaries, just so they have a shot at being 'normal'?
How do we think we are helping when we are rarely even listening to what our children are saying?
Behaviour does not come from nowhere. Bodies that shake and twitch and struggle with simple tasks are not simply speculating about engagement. Sweating and itching and seizures and inflammation inside and out, are not choices.
They are signs of biological conditions, in my opinion. Signs we are being actively encouraged to ignore, in favour of conditioning and training our kids into compliance.
In my world, tears mean something. In my world, my child's opinion is worth something. In my world, a diagnosis does not negate either of the previous two statements.
We will continue to do this CBT.
We will do this in the hope that it helps Billy handle the stress caused by his physical condition, not because he needs to learn how to handle his speculative fears. We will stay there with him, and demand adaptation if we believe it is required.
Each and every time I think I should shut the hell up and let Billy be guided by someone else, we have an experience like we had today. While it happens, I wrestle with the idea that I am too soft, too controlling, too over protective.
And then, sense takes over.
The idea that children need to harden up is insane. The idea that autistic children need to harden up is so counter intuitive, I want to scream. If other people think differently, good luck to them.
Billy has one life. To begin that life on a negative foundation seems beyond insanity.
I realise that many people (parents and professionals) think that guiding an autistic child towards something that approximates non-autistic, despite their clear discomfort, is responsible genius of the highest order.
I am, clearly, not one of those people.
Today was hard. It gets harder as Billy gets older, because the thought that his difference might be shrinking minimises exponentially. That doesn't make it harder on Billy, and it doesn't make it harder on us. It makes it harder because the medical professionals who work with him are not even acknowledging the individuality of his journey.
The cookie cutter approach to autism is getting rusty. I wonder who it has 'worked' for in the past, but I can guarantee it has never worked for Billy and it is not working now.
I fear, we are sliding back in time, not just in our story, but in genuine progress in understanding and managing autism.
From service providers promoting archaic views of autism, to academics selecting the research that backs up their chosen field of service provision, to the doctors brandishing the word evidence like it wasn't unwieldy, conditional and compromised by funding.
We are disappearing up our own industry.
So, why do I let this happen? Because I have to at least try. Because I feel pressure to do the 'right thing'. Because there is no alternate service to choose from that isn't dripping in snake oil or completely inappropriate.
It may or may not be useful. It may or may not be damaging. It may or may not be right.
I'm thinking I'll start gambling. The odds of success seem to be about the same.
The initial weeks of the program were about helping Billy understand what anxiety is, and giving him tools to handle that anxiety. It's been really effective. He gained a lot, and utilised it gleefully in his daily life.
This week we started to deal with Billy's actual anxieties, which are all specific sound related.
And, in today's session, we hurtled backwards in time.
The first time we thought something was 'going on' with Billy was when he was one month old. We took him to the supermarket, and some friends stopped us to admire our beautiful new baby. As they spoke, they crashed a trolley into the stack of trolleys near the shop's entrance. Billy stiffened like he never had before, and cried like he'd been hit. (He hadn't).
When he was 11 months old. We took Billy to a birthday party, where a young boy (ironically with Aspergers) took great delight in whooping like an old school cowboys and indians movie soundtrack. Billy, who was then and remains, the Dalai Lama, cried like he'd been crushed in a vice.
When Billy was almost two, I took him to a playgroup. Kids of the same age, ran around him. He watched with interest until two of them crashed into each other and started to cry loudly. Billy cried like he'd been knocked over.
I could recall incident after incident, but trust me that sitting in the psych's office today, and seeing him succumb to an hour's worth of pressure to handle the possibility of dog barking was like watching my child fall off a net-less trampoline in slow-mo on YouTube.
We have not followed a conventional path through autism related therapy.
We have not followed the path laid out for most families in Australia (EI, OT, ST, ABA, satellite class, mainstream school with support, mysterious loss of symptomology and speculative acceptance of the captaincy of the football team) because Billy was not comfortable on that path.
He cried when he was placed in groups of children. He got sick the more we made him spend time with large groups of children. He became intensely stressed when we forced him to pretend to be just like the NT kids.
Neither of us felt comfortable forcing him through hoops that were clearly painful. We observed other children who coped just fine. We saw some kids who had transient anxiety and 'got over it. We saw many children with impairments in communication and social skills show their discomfort with their lot by screaming, biting and tantrumming.We did not want that for our child, who was already struggling with a life threatening demyelinating condition.
So we pulled him away.
We did Sensory Integration therapy. We taught him at home while he did reduced pre-school hours. We carefully chose a small supposedly compassionate community school who we believed would protect him.
The wheels fell off slightly when that school made the choice to misinterpret Billy's stress and illness as parental neglect. It didn't take long to fix this, by lawyering up and deciding to home school.
The simple solution, to us, was to respond to our son's needs, and do things in a way that was manageable to him.
His defining impairment, a spectacular hearing sensitivity, confounded everyone until last year when an ENT did a bunch of diagnostic tests and came up with a feasible hypothesis that can't be tested until Billy's nervous system is fully grown (around 12 years old).
This year, we were convinced by Billy's psychologist (after some odd assertions from his GP, his Neurologist and a geneticist) to attempt to address Billy's sound related anxiety levels with a CBT program called Cool Kids.
So... we have arrived back at the beginning.
We are again, watching our child struggle in a truly inhuman fashion, as we are expected to accept it is a part of his journey.
By inhuman, I mean, lamb to the slaughter style experiences.
I mean, deflecting questions about what might happen, with lies about 'not being sure', for fear of him backing out altogether. I mean walking him into a room knowing that what happens in there is going to distress him beyond anything he could dream up in his worst nightmares. I mean sitting with wide eyes, pasted over with fake smizing, as my child sweats, clenches and eventually breaks down.
I am his mother. It does not feel right to do this.
He is definitely learning strategies to handle anxiety. At the same time, he is being taught that his anxiety has no rational base, and that's where the problem really lies.
On the one side, we have an ENT, with scans and audiometry and research studies detailing a condition called Cochlear Deheisence. On the other we have psychologists, with their collected wisdom about autism and anxiety.
In the middle, we have the most trusting, positive, compliant, willing child I have ever met.
This is not the first time he's been stuck in the middle. The GI says , 'It's autism' and he stands in the middle while we say 'What?'. The neuro says 'Lots of autistic kids have seizures' and we look at him say 'Why?'. The geneticist says, 'There's no reason for his autism' and we sign and say 'Where did you get the idea we were asking you that?'
It's truly like being in a dumb Hollywood movie. I want to yell at the screen... Why in heavens name are we persisting in viewing autism as a behavioral monster that requires taming?
What parallel universe are we living in where we think it is in the interests of children to force them repeatedly and without their permission beyond their boundaries, just so they have a shot at being 'normal'?
How do we think we are helping when we are rarely even listening to what our children are saying?
Behaviour does not come from nowhere. Bodies that shake and twitch and struggle with simple tasks are not simply speculating about engagement. Sweating and itching and seizures and inflammation inside and out, are not choices.
They are signs of biological conditions, in my opinion. Signs we are being actively encouraged to ignore, in favour of conditioning and training our kids into compliance.
In my world, tears mean something. In my world, my child's opinion is worth something. In my world, a diagnosis does not negate either of the previous two statements.
We will continue to do this CBT.
We will do this in the hope that it helps Billy handle the stress caused by his physical condition, not because he needs to learn how to handle his speculative fears. We will stay there with him, and demand adaptation if we believe it is required.
Each and every time I think I should shut the hell up and let Billy be guided by someone else, we have an experience like we had today. While it happens, I wrestle with the idea that I am too soft, too controlling, too over protective.
And then, sense takes over.
The idea that children need to harden up is insane. The idea that autistic children need to harden up is so counter intuitive, I want to scream. If other people think differently, good luck to them.
Billy has one life. To begin that life on a negative foundation seems beyond insanity.
I realise that many people (parents and professionals) think that guiding an autistic child towards something that approximates non-autistic, despite their clear discomfort, is responsible genius of the highest order.
I am, clearly, not one of those people.
Today was hard. It gets harder as Billy gets older, because the thought that his difference might be shrinking minimises exponentially. That doesn't make it harder on Billy, and it doesn't make it harder on us. It makes it harder because the medical professionals who work with him are not even acknowledging the individuality of his journey.
The cookie cutter approach to autism is getting rusty. I wonder who it has 'worked' for in the past, but I can guarantee it has never worked for Billy and it is not working now.
I fear, we are sliding back in time, not just in our story, but in genuine progress in understanding and managing autism.
From service providers promoting archaic views of autism, to academics selecting the research that backs up their chosen field of service provision, to the doctors brandishing the word evidence like it wasn't unwieldy, conditional and compromised by funding.
We are disappearing up our own industry.
So, why do I let this happen? Because I have to at least try. Because I feel pressure to do the 'right thing'. Because there is no alternate service to choose from that isn't dripping in snake oil or completely inappropriate.
It may or may not be useful. It may or may not be damaging. It may or may not be right.
I'm thinking I'll start gambling. The odds of success seem to be about the same.
Wednesday, July 18, 2012
What am I here for?
Over the last three days, I have found myself engaged in hefty discussions on Facebook.
I quite like a good discussion, and really like hearing what other people have to say. I am amazed and delighted, again and again that there is such a diversity of opinion and perspective in autism world.
It definitely makes me think about what I am doing - as a mother, as a writer, as a human being.
So, I'm going to try and encapsulate where my head and heart are at, today. In one post. I'm absolutely certain it will change, as it has so dramatically over the last eight years or so, but hey...
Here are my core thoughts right now.
1. There are clearly many kinds of autism.
For what its worth, I reckon there is a relationship between what we called autism, when Kanner was making his first notes and what is called autism now. I believe autism has morphed and developed in a lock step kind of relationship with the world in which it exists.
I'm not dropping any bombshells here, clearly.
The challenges are two, with this situation.
One is that we talk about autism like it is one thing, with one unified voice and one unified approach. That is clearly impractical, historically and medically.
The second is that autism is diagnosed by checking off behaviours on a list. Behaviours, as we all know when we unleash the cupcakes at a birthday party, do not come from nowhere. The current process of diagnosing autism does not, in any way, consider the biological origins of said behaviour, it simply notes their presence.
Why don't we change this?
Why don't we test the bejesus out of as many people with autism as we can? Why don't we pool all those results and try and learn something from them. Why are we not stepping up as an international community and doing something to understand what the hell we are dealing with?
Why do autistic people have a 'mental illness' diagnosed under the DSM? How do we know it's not a disease? How do we know it's not an environmental reaction? How do we know how to make it better, when we don't know what it is?
I do not see other disorders being encouraged to STFU and just accept that it happens. I see TV campaigns to halt the progress of other disorders. I see appeals for research to unlock the mysteries of disorders. I see celebrities encouraging us to fight other disorders, especially ones that randomly strike children.
Autism has talked itself into two fairly polarised positions. Fight like a banshee (which I am leaning towards a little more every day) or stick your head in the sand (for various equally valuable self preserving reasons).
This gets trickier when we see that one side (the sandy one) is led by adults with autism who have the skills to articulate for themselves. The other side is led by parents who have watched their children develop autism.
You don't have to be Sherlock Holmes to work out that we are dealing with (at least) two very different disorders. Unless parents in the 1950-70s were complete arseholes who didn't care to react as their kids lost skills and/or stopped developing in front of their eyes.
2. I believe we need to know what causes autism, so we can prevent it, if it is possible to do so.
This is NOT about saying people who currently are autistic are not valuable people. That would be like saying people with cancer are useless because we agree we should do all we can to prevent cancer.
I happen to love someone with autism. That does not mean I love autism, simply because I find that concept unusual.
Autism is not a person. It is something people have (or are, depending on where you stand on the neurodiversity scale). It goes without saying that anyone who has a child with autism loves them. I reckon it is an individual decision about whether one chooses to 'love' the disorder, or the effect the disorder may have on your life.
Back to the real world - research. Let's get the gloves off and start doing something. What the hell are we waiting for (beyond money, more about that later).
I think we have a lot of leads now.
If I was queen of medical research and had Bill Gates billions, I would be handing this list onto my minions.
- look at immune systems
- look at environmental toxins (including vaccines and their interaction with different immune systems)
- look at diet
- look at food storage (esp. plastic)
- look at food production (esp. pesticides and soil integrity)
- look at building materials (esp. paint, flame retardants, whetever the next generation's asbestos will be)
I would test in utero (carefully).
I would test just post birth.
I would test each and every person who has an adverse reaction to a vaccination or medicine.
I would test mothers.
I would test fathers.
I would test siblings and grandparents and cousins.
I would share this research, endlessly, to anyone who wanted it. I would invent a system so everyone who wanted to could participate without eating away at its validity. I would make sure that money never ever got in the way of people finding out as much as they possibly could about themselves/their children/their peers.
I would embrace the fact that we live in a big world that is concurrently tiny. In 30 years I've gone from writing cumbersome paper letters to my family on the other side of the world to being able to chat to them face to face in real time on a thin little book cover thingo. We have the technology. We should be using it.
And if you are in my family on the other side of the world and you are going, 'What? she NEVER Skypes me?' Shoosh, I don't Skype anyone. But, the point is, I could.
3. I believe money, apathy and fear are stopping progress in the field of autism.
The money speaks for itself (too expensive to deal with, much easier to blame parents and disarm them with doubt, problem is too big now to even contemplate dealing with any of it, it's more important to fight pretend wars and send shit into space to see if it floats...).
The apathy is endemic. A fair proportion of people will never want to engage with the reasons behind anything. This is often because they have a framework that keeps them satisfied. Maybe religious, maybe scientific, maybe cultural... something that means they feel little responsibility to anyone beyond their own. I'm kind of jealous of them to be honest, but I know I'll never be them.
The fears (likely the reasons many people fall into apathy), make no sense to me at all. Then again, fear has never seemed like a motivator for anything positive to me. I have plenty of fears, but using them to avoid what seems necessary or important is just plain stupid.
Let me address a few. We only live in a sci-fi movie if we choose to. Gattaca is not real, but it could be if we let it. Change is going to occur whether we engage with it or not. I choose to engage, so I have no reason to sit around being grumpy about people doing stuff I disagree with.
Fear of what people might do with research is like microwaved dinner. Pointless and unsatisfying, at the end of the day. Ethics is based on the right or wrong of what individuals choose to do with information. One needs information to make that choice.
4. I believe we need to wake up and accept what's going on
I feel myself being seduced with spurious logic, sometimes. Here are a few things I think we are being told to appease us.
- the diagnosis rate of autism is accelerating because of better diagnostic practices.
Scratch the surface of any autism parent and you will see varying degrees of distrust and indifference towards the medical fraternity. This doesn't come from drinking too much coffee. It comes from years of being ripped off, ignored, questioned, misinterpreted and disrespected.
If there are new improved diagnostic professionals lurking out there, they are hiding their light under a very incompetent bushell.
Also, show me the evidence to support this theory. There must be some, right? You are the scientists.
- autism is nothing but difference that lazy parents are pathologising rather than accepting.
Come and live in my house, with my high functioning son, for a day. See how deep the disability runs in his body, his brain, his capacity to function. See how much choice is involved in his ability to be impaired or not. See the filing cabinet drawer (yes a whole drawer) full of his medical records. See the efforts we have had to take to ensure he is adequately educated and not hospitalised.
If you are still not convinced, I'll send you to five other houses where kids who are 'just different' are in major mental health crisis, attacking their siblings and are dealing with doses of medication horses would baulk at. Then they will send you on to five families they know.
It is NOT getting easier. It is getting harder. It is not getting simpler, it is getting more complex.
- the problem is with 'society' not understanding autistic people.
This definitely is a problem. It is not the problem.
Arguing about who deserves more understanding or respect is insane to me. Everyone deserves respect. Full stop.
The problem is that we are doing something to add exponentially to the disabled community, and we don't know what it is. More to the point, we are not adapting our society to accommodate the needs of this increasing population. Even more to the point, we are hijacking ourselves with arguments about who is more right, who needs more quicker, and who is better off, while the 'society' that is supposedly not understanding us is looking on bemused.
- autism has been hijacked by crazy hippy celebrities who just want to sell more magazines and movies.
Yup. Making up stories about your kid having seizures is a great way of getting me to look at your boobs. Inventing conspiracy theories about vaccines will absolutely make me watch your latest talk show. Purporting regimes of supplements will absolutely make me buy your album.
Seriously. WTF?
The celebrities who are sticking their heads above the autism trenches are parents, just like me, and maybe you. We share the experience of being scared witless by the fear of losing our children (literally or figuratively). We share the panic borne of realising there is no reliable information out there to support our children literally or figuratlvely.
They have access to the media, and so they use it. I, for one, thank them, every single day.
Do they make mistakes? Sure. Do they change their minds? Yup. Do we all do both of those things when wrangling with a some new and ever-morphing challenge? Of course we do. The only difference is no-one sees us doing it.
- there is no evidence to support... (insert anything you like).
See points 1 and 2.
We are allowing ourselves to be hoodwinked into passivity. I reckon, if we are going to be passive, best we be aware of choosing to be so.
For me... It is not OK to me to let things go on like they are. It is not OK to me to continue to ignore the increasing diagnosis rate. It is not OK to sit by and do nothing.
Many may disagree.
Good.
I look forward to many more robust discussions on Facebook.
More importantly, I look forward to change. Real, appreciable change. I hope it comes in time to assist Billy, but that's not the only reason why I think it's necessary.
Here's why I think it's necessary.
Go into your boxes (or folders) of photos and find one of yourself, or someone you love pregnant. Look into the eyes of the woman in that photograph and see the joy. Go find another photo, maybe one of those ones we all have of the moments soon after our child's birth. Take a moment to really feel the excitement and the hope buzzing between the people in the photo. Find another picture - a first smile, a first step, a first bowl of pumpkin or something...
Remember the joy you felt when you experienced those things with your child. Take a look at your own photos if you've glossed it over.
Then, consciously suck the happiness out of your memories. Replace the happiness with something else. First shock, then fear, then some emergent hope. You will always feel love, but the rest of the emotions in those photos will always be compromised. Not gone, just changed. Replaced with something else, something you can't ever really get a handle on because you don't know what it is. Something no-one except a few angry celebrities seem to care about.
I don't want more people to have to go through what we have been through. I don't want more and more children to develop autism and deal with it's challenges if there's a chance that it might not be necessary, or that we could reduce the severity of it, if it does happen.
Even a small chance is worth fighting for.
To me, at least.
I quite like a good discussion, and really like hearing what other people have to say. I am amazed and delighted, again and again that there is such a diversity of opinion and perspective in autism world.
It definitely makes me think about what I am doing - as a mother, as a writer, as a human being.
So, I'm going to try and encapsulate where my head and heart are at, today. In one post. I'm absolutely certain it will change, as it has so dramatically over the last eight years or so, but hey...
Here are my core thoughts right now.
1. There are clearly many kinds of autism.
For what its worth, I reckon there is a relationship between what we called autism, when Kanner was making his first notes and what is called autism now. I believe autism has morphed and developed in a lock step kind of relationship with the world in which it exists.
I'm not dropping any bombshells here, clearly.
The challenges are two, with this situation.
One is that we talk about autism like it is one thing, with one unified voice and one unified approach. That is clearly impractical, historically and medically.
The second is that autism is diagnosed by checking off behaviours on a list. Behaviours, as we all know when we unleash the cupcakes at a birthday party, do not come from nowhere. The current process of diagnosing autism does not, in any way, consider the biological origins of said behaviour, it simply notes their presence.
Why don't we change this?
Why don't we test the bejesus out of as many people with autism as we can? Why don't we pool all those results and try and learn something from them. Why are we not stepping up as an international community and doing something to understand what the hell we are dealing with?
Why do autistic people have a 'mental illness' diagnosed under the DSM? How do we know it's not a disease? How do we know it's not an environmental reaction? How do we know how to make it better, when we don't know what it is?
I do not see other disorders being encouraged to STFU and just accept that it happens. I see TV campaigns to halt the progress of other disorders. I see appeals for research to unlock the mysteries of disorders. I see celebrities encouraging us to fight other disorders, especially ones that randomly strike children.
Autism has talked itself into two fairly polarised positions. Fight like a banshee (which I am leaning towards a little more every day) or stick your head in the sand (for various equally valuable self preserving reasons).
This gets trickier when we see that one side (the sandy one) is led by adults with autism who have the skills to articulate for themselves. The other side is led by parents who have watched their children develop autism.
You don't have to be Sherlock Holmes to work out that we are dealing with (at least) two very different disorders. Unless parents in the 1950-70s were complete arseholes who didn't care to react as their kids lost skills and/or stopped developing in front of their eyes.
2. I believe we need to know what causes autism, so we can prevent it, if it is possible to do so.
This is NOT about saying people who currently are autistic are not valuable people. That would be like saying people with cancer are useless because we agree we should do all we can to prevent cancer.
I happen to love someone with autism. That does not mean I love autism, simply because I find that concept unusual.
Autism is not a person. It is something people have (or are, depending on where you stand on the neurodiversity scale). It goes without saying that anyone who has a child with autism loves them. I reckon it is an individual decision about whether one chooses to 'love' the disorder, or the effect the disorder may have on your life.
Back to the real world - research. Let's get the gloves off and start doing something. What the hell are we waiting for (beyond money, more about that later).
I think we have a lot of leads now.
If I was queen of medical research and had Bill Gates billions, I would be handing this list onto my minions.
- look at immune systems
- look at environmental toxins (including vaccines and their interaction with different immune systems)
- look at diet
- look at food storage (esp. plastic)
- look at food production (esp. pesticides and soil integrity)
- look at building materials (esp. paint, flame retardants, whetever the next generation's asbestos will be)
I would test in utero (carefully).
I would test just post birth.
I would test each and every person who has an adverse reaction to a vaccination or medicine.
I would test mothers.
I would test fathers.
I would test siblings and grandparents and cousins.
I would share this research, endlessly, to anyone who wanted it. I would invent a system so everyone who wanted to could participate without eating away at its validity. I would make sure that money never ever got in the way of people finding out as much as they possibly could about themselves/their children/their peers.
I would embrace the fact that we live in a big world that is concurrently tiny. In 30 years I've gone from writing cumbersome paper letters to my family on the other side of the world to being able to chat to them face to face in real time on a thin little book cover thingo. We have the technology. We should be using it.
And if you are in my family on the other side of the world and you are going, 'What? she NEVER Skypes me?' Shoosh, I don't Skype anyone. But, the point is, I could.
3. I believe money, apathy and fear are stopping progress in the field of autism.
The money speaks for itself (too expensive to deal with, much easier to blame parents and disarm them with doubt, problem is too big now to even contemplate dealing with any of it, it's more important to fight pretend wars and send shit into space to see if it floats...).
The apathy is endemic. A fair proportion of people will never want to engage with the reasons behind anything. This is often because they have a framework that keeps them satisfied. Maybe religious, maybe scientific, maybe cultural... something that means they feel little responsibility to anyone beyond their own. I'm kind of jealous of them to be honest, but I know I'll never be them.
The fears (likely the reasons many people fall into apathy), make no sense to me at all. Then again, fear has never seemed like a motivator for anything positive to me. I have plenty of fears, but using them to avoid what seems necessary or important is just plain stupid.
Let me address a few. We only live in a sci-fi movie if we choose to. Gattaca is not real, but it could be if we let it. Change is going to occur whether we engage with it or not. I choose to engage, so I have no reason to sit around being grumpy about people doing stuff I disagree with.
Fear of what people might do with research is like microwaved dinner. Pointless and unsatisfying, at the end of the day. Ethics is based on the right or wrong of what individuals choose to do with information. One needs information to make that choice.
4. I believe we need to wake up and accept what's going on
I feel myself being seduced with spurious logic, sometimes. Here are a few things I think we are being told to appease us.
- the diagnosis rate of autism is accelerating because of better diagnostic practices.
Scratch the surface of any autism parent and you will see varying degrees of distrust and indifference towards the medical fraternity. This doesn't come from drinking too much coffee. It comes from years of being ripped off, ignored, questioned, misinterpreted and disrespected.
If there are new improved diagnostic professionals lurking out there, they are hiding their light under a very incompetent bushell.
Also, show me the evidence to support this theory. There must be some, right? You are the scientists.
- autism is nothing but difference that lazy parents are pathologising rather than accepting.
Come and live in my house, with my high functioning son, for a day. See how deep the disability runs in his body, his brain, his capacity to function. See how much choice is involved in his ability to be impaired or not. See the filing cabinet drawer (yes a whole drawer) full of his medical records. See the efforts we have had to take to ensure he is adequately educated and not hospitalised.
If you are still not convinced, I'll send you to five other houses where kids who are 'just different' are in major mental health crisis, attacking their siblings and are dealing with doses of medication horses would baulk at. Then they will send you on to five families they know.
It is NOT getting easier. It is getting harder. It is not getting simpler, it is getting more complex.
- the problem is with 'society' not understanding autistic people.
This definitely is a problem. It is not the problem.
Arguing about who deserves more understanding or respect is insane to me. Everyone deserves respect. Full stop.
The problem is that we are doing something to add exponentially to the disabled community, and we don't know what it is. More to the point, we are not adapting our society to accommodate the needs of this increasing population. Even more to the point, we are hijacking ourselves with arguments about who is more right, who needs more quicker, and who is better off, while the 'society' that is supposedly not understanding us is looking on bemused.
- autism has been hijacked by crazy hippy celebrities who just want to sell more magazines and movies.
Yup. Making up stories about your kid having seizures is a great way of getting me to look at your boobs. Inventing conspiracy theories about vaccines will absolutely make me watch your latest talk show. Purporting regimes of supplements will absolutely make me buy your album.
Seriously. WTF?
The celebrities who are sticking their heads above the autism trenches are parents, just like me, and maybe you. We share the experience of being scared witless by the fear of losing our children (literally or figuratively). We share the panic borne of realising there is no reliable information out there to support our children literally or figuratlvely.
They have access to the media, and so they use it. I, for one, thank them, every single day.
Do they make mistakes? Sure. Do they change their minds? Yup. Do we all do both of those things when wrangling with a some new and ever-morphing challenge? Of course we do. The only difference is no-one sees us doing it.
- there is no evidence to support... (insert anything you like).
See points 1 and 2.
We are allowing ourselves to be hoodwinked into passivity. I reckon, if we are going to be passive, best we be aware of choosing to be so.
For me... It is not OK to me to let things go on like they are. It is not OK to me to continue to ignore the increasing diagnosis rate. It is not OK to sit by and do nothing.
Many may disagree.
Good.
I look forward to many more robust discussions on Facebook.
More importantly, I look forward to change. Real, appreciable change. I hope it comes in time to assist Billy, but that's not the only reason why I think it's necessary.
Here's why I think it's necessary.
Go into your boxes (or folders) of photos and find one of yourself, or someone you love pregnant. Look into the eyes of the woman in that photograph and see the joy. Go find another photo, maybe one of those ones we all have of the moments soon after our child's birth. Take a moment to really feel the excitement and the hope buzzing between the people in the photo. Find another picture - a first smile, a first step, a first bowl of pumpkin or something...
Remember the joy you felt when you experienced those things with your child. Take a look at your own photos if you've glossed it over.
Then, consciously suck the happiness out of your memories. Replace the happiness with something else. First shock, then fear, then some emergent hope. You will always feel love, but the rest of the emotions in those photos will always be compromised. Not gone, just changed. Replaced with something else, something you can't ever really get a handle on because you don't know what it is. Something no-one except a few angry celebrities seem to care about.
I don't want more people to have to go through what we have been through. I don't want more and more children to develop autism and deal with it's challenges if there's a chance that it might not be necessary, or that we could reduce the severity of it, if it does happen.
Even a small chance is worth fighting for.
To me, at least.
Wednesday, July 11, 2012
A fortuitous flu...
This is week three of Billy's adventures in CBT - cognitive behavioural therapy. It's week two of my world's strangest flu. These two things are happily (and oddly) linked.
I am not a fan of behavioural therapy for Billy. It has never felt right for him. I see its benefits for other kids, for sure, just not for Billy. So, when his psychologist suggested this program, I was dubious.
Anxiety has become a bigger issue in Billy's life over the last year or so. We saw a big spike when we started medicating him for his GI issues, but maybe that was coincidence. We saw a bunch of new anxiety related behaviours when he started having seizures this January, but maybe the doctors are right and that's unrelated too.
He is most obviously anxious about two things - sound (dog barking/coughing/baby crying) and being left alone (and the associated lurking monsters, creeps and ghosts). He began to spin off into a cycle of really negative thoughts, each time these fears are provoked. And that's when we realised we needed some management techniques. Billy's psychologist authored an ASD specific version of the Cool Kids Program, and suggested it might be right for him.
We did an intake interview to do this course as a part of a group (the standard way to run it), but they didn't feel as though they could accommodate Billy's needs. Then, we were offered the chance to do it solo, with one of the younger psychologists in Billy's psych's practice.
Three weeks in, and I could not be more impressed with what is happening.
Billy has learned to identify anxiety, both intellectually and physically. He does body checks to assess how (and where) his anxiety manifests. He has an ever growing toolkit of strategies. It is astonishing to see how he is embracing (and utilizing) what he is learning. In three weeks.
It's really wonderful to see him building a trusting relationship with the lovely psychologist. It's amazing to see how articulate he is about his feelings. It's confronting to sit in the waiting room while your child faces his fears in another room.
It makes me think a lot about the journey we go on as autism parents.
The clearest thing in my mind, right now, is that any discomfort I may feel in any part of this job, is miniscule compared to what Billy feels. I have nothing but admiration for him, especially as he grows and maintains an inspiring-ly positive outlook on the world and his potential in it.
I struggle A LOT to get a practical handle on what the hell I am aiming to do as his mother/carer.
Why do we do all this therapy? How do we handle his obvious challenges? How much do we adapt life to accommodate his unique needs?
What's the desired outcome here?
I have developed a slight issue with therapy of all kinds, and I know it's not helpful. I very firmly believe that all Billy's challenges come from a biological base. It's nonsense, in my mind, to think anything else. It's not like the 'behaviours' we call autism just emerge of their own accord. So there's a part of me that thinks engaging in external therapies in an attempt to regulate these behaviours is simply playing with behavioural play dough.
Also, it feels a little like I'm denying the 'medical-ness' by acknowledging that therapy might help. I know this makes no sense. Reading it back it seems non-sensical, but when a neurologist suggests a psychiatrist might help with a physiological hearing problem, I bristle with indignation. When I grow up, I will embrace the fact that treatment is a many faceted beast. Right now, I want to punch people for the inference that my son might be capable of being 'better' if I just manned up and forced him to be.
I don't believe 'normal' is the aim, that much is clear. He is who he is.
I bristle when I see others disciplining Billy for flapping, humming, stimming (insert autistic/sensory behaviour of choice). It feels like telling a person in a wheelchair to stop spinning those wheels. I get that it might be hard for him to order a cup of coffee if he can't stop squinting at the shiny spoons, but that is a long way off.
I have stopped congratulating us when he does something 'age appropriate' too. It genuinely irks me that the message that I'm giving my kid is that the other kids are right (and so, he is 'wrong'). Again, I'm assuming we can get to the point where he understands that re-enacting a cheetah/gazelle hunt from David Attenborough's Life of Mammals, word and action perfect is not appropriate activity for the workplace. Unless that workplace is the African Savannah, which would be Billy's dream anyway.
I also do not, for a minute, believe that the 'problem' lies in the rest of the world, and their attitudes to difference. That kind of 'us v them' narrative is about the most unhelpful thing I have come across in this journey. The advocacy part of being an autism parents seems like the easiest task we have. Like many things, Billy has learned by a combination of his own strength of character and observation of the people around him, to advocate for himself. He is very open and honest about his needs.
I don't see that Billy has a 'problem'. I see that as a part of his life, he has a disability. I see that his disability is born of medical issues that are being ignored by the medical profession, but that hoary old chestnut is what I always talk about. Back to the therapy question... what's the aim?
The CBT has helped me understand that, for us, the aim is life.
Just life.
Happy, healthy, full of potential, full of opportunity, devoid of as much fear and sadness as possible...
If I could catch a silver bullet and make the autism go away, I would. I won't lie. Billy is an only child, living far away from the majority of his family. The fact that he is facing an adult life without a network of unconditional family support is frightening as hell. The idea of him living in this giant city as a solo act would be scary enough if he was neurotypical, spectacularly wealthy and a Rhodes Scholar. If that same silver bullet could blast away the gut issues, the seizures, the autoimmune illness, I'd be thrilled as well.
I guess, in the meantime, while I wait for the bejewelled weaponry, the therapy is about making Billy's reality as empowered, positive and practical as possible. I'm a little bit embarrassed that I thought it was all about making the autism go away, at the beginning, but I think I get it now.
It's not about telling him he's 'wrong'. It's not about making him 'normal'. It's about making the challenging more possible, if possible.
What has this got to do with the flu?
Billy cannot tolerate coughing from other people. Interestingly, he rarely coughs himself. This flu I have is a cough, just a cough. No runny nose, no sore throat, just the sort of cough you don't want. It's loud, it's rattly and it's been nasty for almost two weeks.
My crusty cough been the ultimate provocation of Billy's emergent anxiety management tools.The noise is intolerable, and in order to protect him from the noise, I have to leave him alone. It's a vicious, phlegm filled lonely circle.
However, using his CBT skills, he has learned to breathe, find his worry scale, point to a number and formulate a helpful thought to get him through the sound. He has a scaffold to get through the moment (and the 'moment' is everything for Billy) and I have some slight relief from the idea that my hacking attempts at lung clearance are killing my relationship with my child for ever.
We have a long way to go. I'm hoping the next seven weeks will be free of sore lungs. I fully expect we will be gifted a weeping baby, a barking dog and a real live creepy ghost to help us learn.
I am not a fan of behavioural therapy for Billy. It has never felt right for him. I see its benefits for other kids, for sure, just not for Billy. So, when his psychologist suggested this program, I was dubious.
Anxiety has become a bigger issue in Billy's life over the last year or so. We saw a big spike when we started medicating him for his GI issues, but maybe that was coincidence. We saw a bunch of new anxiety related behaviours when he started having seizures this January, but maybe the doctors are right and that's unrelated too.
He is most obviously anxious about two things - sound (dog barking/coughing/baby crying) and being left alone (and the associated lurking monsters, creeps and ghosts). He began to spin off into a cycle of really negative thoughts, each time these fears are provoked. And that's when we realised we needed some management techniques. Billy's psychologist authored an ASD specific version of the Cool Kids Program, and suggested it might be right for him.
We did an intake interview to do this course as a part of a group (the standard way to run it), but they didn't feel as though they could accommodate Billy's needs. Then, we were offered the chance to do it solo, with one of the younger psychologists in Billy's psych's practice.
Three weeks in, and I could not be more impressed with what is happening.
Billy has learned to identify anxiety, both intellectually and physically. He does body checks to assess how (and where) his anxiety manifests. He has an ever growing toolkit of strategies. It is astonishing to see how he is embracing (and utilizing) what he is learning. In three weeks.
It's really wonderful to see him building a trusting relationship with the lovely psychologist. It's amazing to see how articulate he is about his feelings. It's confronting to sit in the waiting room while your child faces his fears in another room.
It makes me think a lot about the journey we go on as autism parents.
The clearest thing in my mind, right now, is that any discomfort I may feel in any part of this job, is miniscule compared to what Billy feels. I have nothing but admiration for him, especially as he grows and maintains an inspiring-ly positive outlook on the world and his potential in it.
I struggle A LOT to get a practical handle on what the hell I am aiming to do as his mother/carer.
Why do we do all this therapy? How do we handle his obvious challenges? How much do we adapt life to accommodate his unique needs?
What's the desired outcome here?
I have developed a slight issue with therapy of all kinds, and I know it's not helpful. I very firmly believe that all Billy's challenges come from a biological base. It's nonsense, in my mind, to think anything else. It's not like the 'behaviours' we call autism just emerge of their own accord. So there's a part of me that thinks engaging in external therapies in an attempt to regulate these behaviours is simply playing with behavioural play dough.
Also, it feels a little like I'm denying the 'medical-ness' by acknowledging that therapy might help. I know this makes no sense. Reading it back it seems non-sensical, but when a neurologist suggests a psychiatrist might help with a physiological hearing problem, I bristle with indignation. When I grow up, I will embrace the fact that treatment is a many faceted beast. Right now, I want to punch people for the inference that my son might be capable of being 'better' if I just manned up and forced him to be.
I don't believe 'normal' is the aim, that much is clear. He is who he is.
I bristle when I see others disciplining Billy for flapping, humming, stimming (insert autistic/sensory behaviour of choice). It feels like telling a person in a wheelchair to stop spinning those wheels. I get that it might be hard for him to order a cup of coffee if he can't stop squinting at the shiny spoons, but that is a long way off.
I have stopped congratulating us when he does something 'age appropriate' too. It genuinely irks me that the message that I'm giving my kid is that the other kids are right (and so, he is 'wrong'). Again, I'm assuming we can get to the point where he understands that re-enacting a cheetah/gazelle hunt from David Attenborough's Life of Mammals, word and action perfect is not appropriate activity for the workplace. Unless that workplace is the African Savannah, which would be Billy's dream anyway.
I also do not, for a minute, believe that the 'problem' lies in the rest of the world, and their attitudes to difference. That kind of 'us v them' narrative is about the most unhelpful thing I have come across in this journey. The advocacy part of being an autism parents seems like the easiest task we have. Like many things, Billy has learned by a combination of his own strength of character and observation of the people around him, to advocate for himself. He is very open and honest about his needs.
I don't see that Billy has a 'problem'. I see that as a part of his life, he has a disability. I see that his disability is born of medical issues that are being ignored by the medical profession, but that hoary old chestnut is what I always talk about. Back to the therapy question... what's the aim?
The CBT has helped me understand that, for us, the aim is life.
Just life.
Happy, healthy, full of potential, full of opportunity, devoid of as much fear and sadness as possible...
If I could catch a silver bullet and make the autism go away, I would. I won't lie. Billy is an only child, living far away from the majority of his family. The fact that he is facing an adult life without a network of unconditional family support is frightening as hell. The idea of him living in this giant city as a solo act would be scary enough if he was neurotypical, spectacularly wealthy and a Rhodes Scholar. If that same silver bullet could blast away the gut issues, the seizures, the autoimmune illness, I'd be thrilled as well.
I guess, in the meantime, while I wait for the bejewelled weaponry, the therapy is about making Billy's reality as empowered, positive and practical as possible. I'm a little bit embarrassed that I thought it was all about making the autism go away, at the beginning, but I think I get it now.
It's not about telling him he's 'wrong'. It's not about making him 'normal'. It's about making the challenging more possible, if possible.
What has this got to do with the flu?
Billy cannot tolerate coughing from other people. Interestingly, he rarely coughs himself. This flu I have is a cough, just a cough. No runny nose, no sore throat, just the sort of cough you don't want. It's loud, it's rattly and it's been nasty for almost two weeks.
My crusty cough been the ultimate provocation of Billy's emergent anxiety management tools.The noise is intolerable, and in order to protect him from the noise, I have to leave him alone. It's a vicious, phlegm filled lonely circle.
However, using his CBT skills, he has learned to breathe, find his worry scale, point to a number and formulate a helpful thought to get him through the sound. He has a scaffold to get through the moment (and the 'moment' is everything for Billy) and I have some slight relief from the idea that my hacking attempts at lung clearance are killing my relationship with my child for ever.
We have a long way to go. I'm hoping the next seven weeks will be free of sore lungs. I fully expect we will be gifted a weeping baby, a barking dog and a real live creepy ghost to help us learn.
Friday, July 6, 2012
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