Saturday, June 30, 2012

Why are we winning?

In the world of autism, this is definitely a first world problem.

We're on a positive roll at the moment, on a couple of fronts. I'll go into detail in a second, but first let me drive myself crazy by asking 'why'?

I'd like to know why, so I could do more of the same. I'd like to know why, so others might get a sense of what might work for them. I'd like to know why, so I have some options when we take the inevitable two steps back in the near future. And no, I'm not being cynical or fatalistic. Anyone in autism world knows this is as inevitable as the purchase of the next great Apple product.

Billy is finally mastering the basics of Math(s). When I say basics, I mean basics. I mean number facts to ten, and understanding that 81 is one more than 80. It has been a giant challenge to get this stuff sitting easily in his brain. We have a box full of manipulables, more workbooks, 10 frames and 100s charts and number lines than a whole school and every single elementary maths app ever published. And finally, it's falling into place.

In learning terms, I think the keys have been repetition (read, drilling) and spiral thinking.

Spiral thinking, you ask? WTF? I'll admit I made this up, but I'll try to explain.

The basics, on one level, were too basic for Billy. He was bored. He wanted to move forward. Problem was, he could master an operation in the moment, and then the next time we tried to do it, he would have forgotten the whole thing. It just wasn't sticking.  So... we moved forward (for interest) and simultaneously spiraled back. That's where the apps came in most handy, because the spiraling back could masquerade as fun. We also release Billy from the need to write for much of the spiraling, which allows the actual learning to sink it.

It's the old autism conundrum. Or at least the processing/fine motor challenged autism conundrum. You need to write, but the process of writing turns your capabilities into disabilities. Balancing the need to learn with the need to write is always tricky.

However it's happened, we finally sat on the trampoline (our winter classroom) on Friday and did some simple addition without the aid of MABs or Unifix or number lines. And then we jumped up and down with joy. There may have been a few tears, and they may have not been Billy's.

The other thing that's going on is a huge surge in language.

It's a very surge in a very particular direction. He is suddenly (it seems) able to express the ability to take someone else's perspective. So, we are suddenly hearing phrases like 'do you think I'm lying?' or 'you are just being mean to me' or 'maybe (someone else) will know the answer'.

To those not living with autism of any kind, this may not seem like much in an 8 year old boy. But it's really huge here. It's a circle that's closing communication wise. It means his ability to understand that the bus may be late some days (for reasons beyond his control or understanding) is growing. It means his ability to not blurt out his (very important) opinion while someone else is talking is developing. It means he's able to express what we have known all his life - that he is an equal in this game and that he can and will play as an equal. While also mashing up an episode of the Regular Show and a clip from Mr Bean... but, I digress.

Why is this happening? It's the $64 000 question.

 - We have been hitting the supplements hard, and generally improving his health.
 - His gut is definitely healing, with probiotics and prebiotics.
 - He is taking in a blend of oils (flaxseed, vitamin E, sesame, avocado, macadamia) every day, in quite high quantities (one day I will try to unravel the role of oils in Billy's health... he is one who seems to need a high fat diet to thrive, and I don't know why...)
 - He is doing weekly sensory OT.
 - He is doing weekly CBT.
 - He is calm, or should I say living a life of low demand. Schoolwork, socialisation and stress all come in measured planned doses to maximise the positive in them (and yes, I think some stress is a good thing, more about that another day too).
 - He is growing up.
 - He is communing with aliens while the rest of us sleep.

It could be one of these, or all of these, or none of these.

For now, we'll take it, them, wherever is coming.

I look around, during these times, and while I am really happy for Billy, I can't help but see our friends dealing with their own struggles (and know we'll be back there soon). From ill health, to increasing violence, to physical regression to serious frightening mental illness... its all happening and it's all scary.

This life, for many of us has become a series of fights. Some we win, some we lose, some we just batten down the hatches and wait until they pass. No-one warned any of us that this could be possible when we first heard the A-word. Early Intervention never mentioned it, they were too busy making that crucial 'difference' we all hear about. The doctors and teachers often don't believe these things are happening, until it's too late. Then our kids are waylaid, or incarcerated or hospitalised when really, what they needed was to be respected way earlier.

So, when I ask 'why are we winning?' right now, all I can say is because we are trying. Or maybe because it's our turn, in case there is some perverse overlord of good fortune controlling this game.

No matter what, it's worth writing it down.

I write it down so I can remember, and so others can know, that things will change. For good or the other way, things will change. I am the kind of person who thinks you have no right taking credit for the change if you are not participating in it. I am also someone who thinks we are in extraordinary times in history in regard to the health of our kids.

It is not OK, in my mind, to write off so many kids as collateral damage. It's not OK to passively accept that our actions, whether they are health related or environmentally focused, are excusable when they are having such an obvious effect on our kids, never mind on the planet.

For now, though, I'll take the number facts and the joyous jumping on the trampoline.

Then, on Monday, we start the fight again.

Oh hang on, it's school holidays. Screw that, we're going to the zoo.

Thursday, June 21, 2012

Above and beyond the call...

I'm not sure I've ever been this thankful in my life.

Yesterday, Billy was able to do something he has wanted to do for the vast majority of his life - something that his brand of autism has stopped him from doing. He is 50 feet tall today, immersed in the knowledge he gained from his experience and he thinks the world is his oyster.

This is not a set of circumstances he experiences every day, as hard as we try to make it happen.

Long story short, Billy's hearing is hypersensitive. It's insanely hypersensitive. It rules his life with an iron fist (or maybe it's a very delicate spiderweb lace glove...)

While autism (the language/social/interests part of his life) is obviously present, it is not the thing that impairs his life, per se. He talks, he plays, he tries new things. He doesn't always succeed, it isn't always easy, and it sure doesn't look like the NT kids, but he takes it all on.

The hearing sensitivity impairs his life.

One of the things it stopped him from doing was entering the Nocturnal House of our favourite zoo - Taronga Zoo. This is because there is a soundtrack in there (howling, hooting, night time sounds)and Billy cannot tolerate it - physically or emotionally. We walk past the Nocturnal House, we stand near the Nocturnal House, we talk about how much we want to go into the Nocturnal House, but we do not enter the Nocturnal House.

Until yesterday. The Great Nocturnal House Day of 2012. A very, very good day.

Billy, aka Mr Modern Electronic Living, had suggested we try contacting the zoo via Facebook, after we found their awesome Facebook page. After exchanging a few messages and then emails with the staff at Billy's favourite zoo, first to the social media manager (a very clever and switched on young woman, in my opinion) and then with a wonderful keeper, something awesome happened.

Rob, the extraordinary keeper agreed to switch off the atmospheric soundtrack in the Nocturnal House at the zoo. This was miraculous enough, but it didn't stop there. When we arrived at the zoo yesterday, he asked if I thought Billy would be able to help feed some of the animals.

Does a Bilby poo near gum trees?

For the next 30 minutes or so, Billy was in his element. Feeding, meeting and greeting some of his favourite Australian animals. He asked questions, he answered questions, he got a little bit taller with every step he took. At the end of it all, Rob the keeper gave Billy a DVD of his photographs of all the animals in his care.

Even though the soundtrack is back on now, Billy has a LOT of video, which has already been edited into a movie detailing his journey through the once out-of-bounds Nocturnal House. He has done it. He owns it.

I cannot thank everyone who made this happen enough. It has opened a door in Billy's mind. It made the world, which so often seems like it is against him, seem like it was all there for him. Animals are his world, and yesterday, his passion was affirmed and respected by people other than his parents. Real, kindred spirit type people.

Yesterday, after the Great Nocturnal House Visit of 2012, we walked around the rest of the zoo, with a slightly different step. Billy, exhausted as he was by the specialness of what he had experienced, seemed a little older. He was a little more confident. He approached each exhibit with a little more ownership and knowledge. He held my hand less.  Every so often, he would look at me and say, 'I can't believe I went into the Nocturnal House.'

As we were leaving the zoo, yesterday afternoon, Billy and I had a little chat. I am not sure how much it sank in but I asked him if he was proud of himself. He said he was. I asked why. He said, 'Because I found a way to get into the Nocturnal House.'

Channeling the parents in all the cheesy family dramas I have watched, I said... 'I think you should remember this day for the rest of your life. If there's something you want to do, and it seems really hard, you know now, you can find a way to do it.' Billy thought about this for a second and said, 'So even though you said no McDonalds, If I really want it, I could have it?'


Wednesday, June 20, 2012

What should be, and what is...

This week, Billy spent three days in hospital having a long EEG. The purpose of the EEG was to ascertain whether he was having epileptic seizures.

The good news is that the answer is probably no. We like this news, a lot.

He has, like many autistic people (according to his neurologist), constant epileptic activity in his frontal lobe. This (according to his neurologist) accounts, generally, for his kind of autism.

He told us this on Day Two of the EEG, when he came in to see Billy. He had some theories about the biological etiologies of autism, which were interesting to talk about and gave us some hope that he had his head screwed on somewhere close to his spine. This was some new information to chew over, and some hope that we were guided by someone who might be living in a world that was fully cognisant of the subtleties of autism.

We stayed for another day in the hope of catching an actual seizure (it amazes me that they rely on parents and the kids themselves to say what a seizure is, and mark it on the EEG recordings... I have no idea what a seizure is, I just know my kid is doing new stuff since he woke up shaking in January. But I digress.

Over the second day, I marked a few times I thought (and Billy thought) he was having what he calls 'the funny feeling'. Then the neurologist came back.

Here's a summary of our final conversation, before Billy left the hospital. 

 - The EEG saved Billy from being automatically medicated (something we would have questioned thoroughly) because what I thought was a seizure, is not.

 - The  seizure he had in January was likely epileptic (unlike the neurologist's thoughts at the time, which leaned towards the inflammatory), was a one off random event, with about 60% chance of happening again (because all of us have a 30% chance of a random seizure, and the autistic have a 30% chance of having a seizure, so Billy being both 'us' and 'autistic' gets a double chance).

 - All the new events that have become a part of Billy's life (staring spells, repetitive motor gestures, interrupted speech, tongue thrusting, eye rolling, hyperfocussing, intermittent loss of cognitive focus) are all 'behavioural' (one of my favourite words).

 - There's no point doing the trial of steroids (to see what effect they have on his language/general function) we were planning, as the frontal lobe epileptic activity we can see on the EEG is not in a language centre. This, despite the fact that steroids reduce inflammation, not seizure activity.

 - There is no relationship between Billy's bout of Transverse Myelitis at 3.5 and this activity now. He is just 'unlucky'. The neuro had not looked in depth at Billy's new MRI, as the report said 'no change' from the one Billy had at 3.5 when he had Transverse Myelitis (which, unless I am majorly mistaken would have been an exceptionally unwell brain... so if it's the 'same' then I'd be worried, but I'm likely misreading the situation).

- Billy's hearing sensitivity is 'emotional' and requires the attention of a psychiatrist (yes, a psychiatrist, despite the current work of the ENT, the OT and the CBT psychologist).

 - Autistic kids need socialisation, and really Billy should go to school so he can learn to socialise.

 - See you in 6 months.

And so we go on.

No more editorialising on what the doctors should know, or should do. No more waiting and gnashing of teeth.

Head down, bum up. We know something new today that we did not know yesterday.

Billy has a very active frontal lobe. My next step is to Google the shit out of 'active frontal lobe' and work out what it means. I'm going to find out all I can about what that means for his brain function, behaviour and ability. Then I'm going to support it, any way I can.

At the same time as we were in hospital, a teeny weeny storm was brewing in the autism tea cup, about whether Jenny McCarthy was telling parents they were victims in her keynote at Autism One in Chicago this year.  There were huffings and puffings and more reasoned responses from all over the autism community.

Billy's time in hospital, again, clarifies what I think about this particular swirling of the winds.

I think my child is sick. On top of being clever, and autistic, and beautiful and witty and tall... he is sick. I think he is one of a growing generation of children who is sick, and autistic. I think I, as his mother and as one of the parents of this generation of sick and/or autistic kids, have a moral right to stand up and be counted.

I want to seek information, I want to make change. I want to do this for my child and for his peers. I want to do this for the kids coming up behind him who are charmingly lining up their Thomas trains. I want to do this for the kids who are in utero startling while their glowingly expectant mothers and fathers watch movies. I want to do this for the babies not yet thought of...

I want to prevent autism, in the same way I want to prevent people getting sick from random, irresponsible pesticide spraying or second hand smoke. I do not know what causes autism but I do know I want it to stop. I do not know what makes autistic biology different to NT biology, but I know we need to know so we can make kids less sick. If people don't think their autistic kids are sick, great, that's awesome. They are autistic. Once they were one in 10000, now they are one in 88. That alone should make you sit up and demand to know why. Many, many, many autistic kids are also very sick.

If autism is there, great. We deal with it. If it doesn't have to be there, then for the love of god, I want to stop it.

Clearly, that's just me. What other people choose to do in response to their life circumstances is of no concern to me. That's what makes me a blogger, and someone else a public figure/celebrity/politician.

For now, I take Billy's epileptic activity in his frontal lobe, and add it to the folder of medical reports, that adds to the folders of all the parents of all the autistic kids of all time. So we may one day know what the freaking hell is going on.

Actually... that's an awesome idea.
Oh crap. Another project.

Friday, June 15, 2012

A whack in the face with context...

Billy and I have had a good week. Good weeks are good.

Some weeks on this homeschooling journey are like trying to paint a bright colourful picture with frog spawn. We start each day with fresh resolve, and it somehow ends up in a mess of half filled-in worksheets and flickering apps. There are many variables that lead to this situation - seizures, surprise dog barking episodes, an intense need to build and re-build Island of Sodor scenarios, a head full of advertising jingles and logos...

But some weeks, like this one, we somehow manage to hit a stride and it feels good (at least to this often guilt ridden Mummy).

Billy managed some excellent feats of mental arithmetic (thanks to drilling through a new Maths app, and some great teacher supplied worksheets). He wrote some amazing journals, and showed some really astute reading comprehension. He is spontaneously picking up academic work to fill time (which has never, ever happened before).

And, he taught me something very, very interesting this week.

Billy reads well. He picked it up fairly easily (in contrast to Maths, which may as well be advanced semantic interpretation of 16th century Russian folk dancing, as it is just as accessible to him). I was thrilled with Billy's natural leaning towards literacy, for two reasons. One - pure vanity: being a writer, I was proud to think I had possibly passed on some writer-y genes. The other reason is that the academic successes have been few and far between for him. He loves information, but active aware learning is not his favourite thing. It ranks somewhere near dentist visits and broccoli.

Because we do Distance Education, and his teacher is (by her admission) not comprehensively familiar with autism, we make a lot of videos and send them to her. These videos are of Billy doing various activities, sharing news and reading aloud. Often, his reading, despite his competency, is monotone and looks (to the uninitiated) like he is really struggling to comprehend.

This week, he's been reading about cats. He noticed some of the material was similar to things he had seen on a particular National Geographic kid's series. So, I said to him, kind of as a throwaway... 'Why don't you read this story like Spin (the Narrator, voiced by Dudley Moore), like you are sharing the story with someone.'


Billy went from monotone to multi-tone (if that's not a word, it should be). He lit up, he shared the illustrations with the camera, he speculated about what was happening next. He demonstrated his ability. Charmingly. Disarmingly. Joyfully.

If the mood takes you, here's the link.

It makes me think, a lot, about how I teach him.

Mix Billy with autism and anxiety and processing issues and sensory issues and motor planning issues and eight year old boy issues, and it's obvious there's a lot competing with his ability to successfully complete an arbitrary academic task. This made his journey at school particularly counter-productive. It has been a bit of a challenge for us learning at home too, but we have the time and space to play around until he finds a way in to most tasks.

This week's discovery opens up a world of possibilities.

It's like, if we take the pressure off him 'doing' the task, and put the focus on something past the rudiments of the task (being a Narrator, in this case) the stress level drops. When the stress level drops, the enjoyment level rises. The whimsy arrives. The fun begins.

To be honest, we've noticed this before in his life. I really should have picked this up without the aid of the YouTube anvil in my face.

It's autism 101.

First/Then. You want to endlessly play Thomas? No worries. First bath, then Thomas. You want the iPad surgically attached to your lap. First dinner, the  iPad. Focus on the 'then', suck up (de-emphasise) the 'first'.

The other 'duh' moment is in the context. He was no longer reading, he was imitating. He was improvising. He was performing. While he focused on the imitation, using the book as his material, he didn't need to be stressed about the reading part.

I love how much sharing is going on in the video. We never, ever thought we would see this much sharing. He is genuinely keen to see my reaction, thrilled to be offering something new with every page turn. He's come a long way from the life-avoiding sand-sifting of the past years. We have worked hard to not force him to change, calming his life down, hoping that just this would emerge from his own being.

He continues to thrill us with his capacity. He gets there in his own time, and in his own way. But he gets there - to his own 'there', every single time.

Speaking of there...

Billy's favourite place in Sydney is Taronga Zoo. He has been going there, at least weekly, since he was under two years old. On his first trip, the combination of chip-loving seagulls and noisy children meant we all had a shocker of a time. But the animals drew him back. Again and again and again. He knows the animals like they are his family. He knows everything about every resident of every enclosure. In fact, the first time we knew he had a photographic memory was the second time he entered the Reptile House at Taronga Zoo. He had been there once, and us being newbie autism parents, we had named every animal in a bright, sing-songy voice for him. Flash forward to the second trip,  I videoed him (and the incredulous other patrons) as he named every single creature. Correctly and in order. And some of those fellas have long, complex names.

There's a Nocturnal House at Taronga Zoo. It contains some of Billy's favourite animals (Australian marsupials) and it is dark. Dark is handleable, but the ambient soundtrack (howling wolves and hooting owls) is categorically not. So, for the last six years or so, we have stayed out of the Nocturnal House.

It has been a constant source of sadness and frustration to Billy. He has come up with excellent solutions (constructing a nocturnal house out of toys and cardboard boxes, drawing a nocturnal house and last month - the genius stroke, sending Daddy into the nocturnal house with a video camera.

But he's still nursing a frustrating unrequited Nocturnal House love.

A couple of weeks ago, after some searching for the best tactic, we contacted the zoo. We explained Billy's desire, and his condition, and the next thing we knew, we had an email from the relevant keeper (Rob, who we now love), explaining that the soundtrack could be turned off for a day, just for him.

Next Thursday, we will enter the Nocturnal House for the first time since Billy was in a stroller and I was too insensitive to know he was apoplectic with pain and anxiety.

I cannot thank the staff of Taronga Zoo enough for this. No words can explain how important this is to Billy. I know I sound like some crazy over-protective parent trying to make people do special things for my child. I know the complexities of autism are difficult for the uninitiated to take in. I know that this gesture reinforces the message we try to give Billy every moment of every day - that thinking and acting outside of the box should not be threatening or strange, it's what life is about.

As I said, it's been a good week. I carry on a lot when we have bad times, so I'm happy to be happy about the happy times.

Marsupials, cat books and video cameras. The stuff good weeks are made of.

Gosh, my life has changed.

Wednesday, June 6, 2012

At Hopeful Parents...

Attempting to avoid a virtual hurl at Hopeful Parents today.
Not that I want to vomit on other parents... that would be yucky.

Sunday, June 3, 2012

Poo and cheese...

That may be my favourite blog post title yet.

In all seriousness though, this is another post about poo. It is, hopefully, a beacon of light to the people who are struggling with maintaining poo production and elimination in their lives, especially if the poo in question is the poo of someone with autism.

When Billy was little, he ate everything he was offered. He gave new tastes a go, he had a perfectly predictable relationship with food, and he did not have anything even remotely worrying coming out of his bottom. I worried more about how the dog's poo than Billy's.

His dietary choices started to limit, until he had Transverse Myelitis at three and a half, when it all turned to custard. Actually, it all turned to cement. In a very short time, we were trapped in a cycle of pain, slow motility, constipation and mega colon (not that any doctor ever officially diagnosed any of these things, despite many many questioning visits.) Billy never stopped pooing, he just never pooed enough. He never bloated, and because of his sensory issues, he didn't register the pain until it was severe. Because of this, we didn't know there was a problem, until the problem was a big problem.

We discovered that dairy was a particularly foul kind of glue for Billy's system, as was soy (when we did some early rash product replacements. So we cut them out. Every time we let a little bit back in (and when I say we, I mean the well meaning folk in his life  who are over 60 and believe that ice-cream is the constitutional right of a child), his system would slow down to the point of excruciating discomfort.

He developed chronic reflux, which was misdiagnosed, initially as throat problems (constant coughing to clear the acid burn in his throat and sleep disturbances which were only alleviated by sleeping in what he called a 'tall nest' - a rising pile of pillows that held his torso upright). We took out his tonsils and adenoids, but the throat clearing didn't go away. His breath could've knocked a gum tree over some days, despite scrupulous oral hygiene and at least 3 litres of water every single day.

Enter Dr Poo, and his collection of drugs. Under the banner of 'lots of autistic kids have gut problems' (no specific to Billy diagnostic investigation at all) we were convinced to give Billy osmotic laxatives (here the brands are Osmolax and Movicol) and PPIs (the brand he took was called Somac. Miraculously, they 'cured' the reflux, and they 'cured' the constipation. Problem solved.

Solved, unless we considered the bilious vomiting spells, the (new) chronic anxiety and the fact that as soon as we stopped the drugs, the constipation and reflux returned. Dr Poo (1 & 2, who we went to for a second opinion) thought the drugs were fine, the idea of an 8 year old regularly pooping his pants was just fine, and as his parents we should reconcile ourselves to the fact that it could be a lot worse.

They had a point. It could have been worse, for sure. But it just didn't sit right. It felt like we were being told that since it wasn't awful, we should settle for pretty bad.  Being grateful for things being not as shit as they could be, is about as logical as thinking a nuclear meltdown is OK because it's not Armageddon. He's an eight year old boy who needed drugs to poo every day, with no explanation as to why.

So, we tried a new tactic.

Regular readers and Facebook friends will be familiar with our Journey to Smoothieville. It's been almost six months of daily juices, green smoothies (and all the colours of the rainbow smoothies), superfoods, seeds and nuts (and their associated oils), prebiotics, probiotics and supplements. We stayed away from dairy, we minimised the gluten (we didn't cut it out completely because very single bit of pathology we've ever had done says Billy's body should tolerate gluten just fine, and well... it's one of the healthy-ish things he will eat, in small quantities.)

We started seeing a naturopath, who supervised our choices and tested for things like Leaky Gut (which the Poo Doctors vehemently deny the existence of). We are well aware we are taking the first baby steps on a lifelong journey of health and poopiness.

After four months, we stopped taking the doctor drugs altogether. This week, we reached the six month mark on our journey and thought it was time to try a dairy challenge.

I am proud to report, that a boy-sized homemade mushroom and olive pizza was eaten this week, and there was no interruption in transmission. I may have done a little dance around the bathroom. It may have spilled out into the hall way and into the living room. There may even be a video.

Reading that back, I feel the need to clarify that the 'spilling over' involved dancing and not pooing. Also, the video is brown matter free.

We have a tiny bit more information about what's going on with Billy, gut wise (at the very least, we know he has a less leaky gut than he did six months ago) and we are able to encourage him to make better choices about keeping his own body healthy.

There are two things that strike me in this game.

One, is the whole 'lots of autistic kids have this...' issue. I've talked about it before, and it shits me no less every single day.

Autism is a behavioural diagnosis, not a medical one, at present. It is a collection of behaviours, whereby if you have enough checks against a predetermined list, is called autism. It is not a collection of medical conditions checked against a list. If it was, an ADOS would be a choice of 'GI issues', 'immune issues', 'mitochondrial dysfunction',  'seizures', 'abnormal pathology/neurology', food allergies and intolerances', 'skin issues' etc etc etc.

Doctors lose all moral high ground in my book when they use the 'lots of autistic children have this...' line, especially when they use it at the end of appointments. Like autism's a reason for the condition being there, and for not treating it with anything beyond the long term use of hardcore pharmaceuticals.

These are children. Children who, if they were not already disabled, would not be left languishing in pain or dependent on drugs for basic function. There would be no 'reason' to brush them off, so they would be examined and diagnosed and treated effectively. For some reason, autistic children are not afforded that respect, because 'autism' is a reason. It's a dangerous game of chicken or egg, and fewer and fewer caregivers are willing to play.

The second thing this journey makes me think is that it is sobering how little we know.

It's sobering to think we know so little generally, but seriously frightening how little we know about autism. It's frightening to be the caregiver of a person who's body may or may operate differently to the average bear's body. It's edge of the seat stuff not knowing whether the decisions you make are the right one, and seriously hair-raising suspecting that the decisions the doctors are making are not the right ones.

This week alone, five friends have autistic children who have smacked head first into crisis. The crises are variously medical, all of them are related to the interplay between the bodies of the children, their functioning in the world, and the medication they have been given by well meaning doctors. These crises have ended in hospital for all these kids, as Billy's have many, many times.

At the same time as these crises unfold, a destructive nonsense narrative continues around and between people in the autism community about who is more 'right'. Will the vaccine safety-ers win, or will the neurodiversity-ers come out on top of the right pile. Or are the doctors 'right'? Are the 'I'm so exhausted I'm just getting through every day' families right? It can't be good for us to continue on like this.

We're all right, in my mind, and here's why.

Unless we're all completely off the planet, we are all raising our children the best way we know how. We're getting pooped on and hurled over and bitten and yelled at and cried on... some of us, all of those, every day. And yet, we go on. We're being judged and misunderstood. We're being lauded and celebrated. We're being vilified and we're being recognised.

We're all on different roads on the same journey - trying to get our kids through life.

I write this blog, not to be 'right' or to be celebrated, but to share what has happened on our part of the road. Maybe our journey might help someone else's, or maybe it might shed some light or hope. I hope occasionally, it makes a smile crack on a few faces.

Though I do not know all the folk on this journey with us, I am proud to be among them. I'm not always proud of all of them, but I'm not always proud of myself either (as hard as I try to be saintly).

It makes me sad that even though we are all trying what is likely to be our best for our kids, people in autism world still gain strength from bringing each other down. If nothing else, it makes it extra hard to advocate for your autistic child in the medical and educational system when the autism community itself is so obviously polarised and antagonistic.

What do we know? Nothing much.

What do we all feel? A lot. Most of all, that we want our kids to be well, and happy and respected and understood. Like all parents.

And like many parents, I can tentatively celebrate the effective toilet training of my child. Six or so years later than average, the achievement is still sweet. So sweet, I may do a little more dancing.

And if you know me in real life, you know that my dancing is pretty shit and ultimately very cheesy.