The One Where He Didn't Make The Team

Yes, that has been the big drama of the week. My son didn't make the advanced hockey team he wanted to. Big deal right? #firstworldproblems and all.....

He worked his tail off all summer, I could see the strain on his face as he battled against himself when he couldn't pay attention, or stand still, or show that focus that he needs so badly. He didn't make the team. He's as good as so many other kids who did. Better than others. Yet, he didn't make it.

He was upset. We were upset. I could blame the program for not working on the foundational skills that were some of the reason he came up a little short, but, at the end of the day, my son just doesn't "want" it as badly as the other kids, or rather, he can't keep his squirly self focussed long enough to show others he does. And that is where I feel that he just missed it.

We're trying to focus on the positives of this situation though. Want to hear what great lessons one can learn from not making the team?

- It will help him decide if he wants it enough to keep trying. To keep going, learning, skating. If he wants it, he will develop even more determination. He might even battle and win with his inattention.

- If anyone had told us at the age of 2 when he was diagnosed with classic autism at a moderate to severe level that he would be in with a hope in hell of making an advanced age 8 hockey team, we wouldn't have believed it. He has come SO far. We are incredibly proud, and sometimes when your kid makes so much progress, you can't help glimpse at life as maybe it could be. Those glimpses keep us trucking on.

- He will get to play this season anyway, and even better, with a couple of kids who are his friends from last season. They are fabulous kids who genuinely love him, with parents we like. He will have a blast with them. It will also be a lower pressure environment for him, so that maybe we can nurture that motivation that has been lacking, sadly, I think from the years of ABA he's had.

- We get to not have to play 'Keeping up with the Jones' ' this season, with some of the other hockey parents that are a lot to deal with. They are hardcore. They are intense. They are determined their children will make the NHL, or at the least, they will play college hockey. Come hell or high water. That is a relief for us. We are just not that kind of people. Sometimes I wish we were able to be, but, autism comes into your life and pretty much takes that away. Yes, it makes me sad, but at the same time, achievements that others take for granted - a meaningful conversation, your child finally connecting, those become so clear and grounding. And important. So important.

- We are going to work on his skating skills as a foundation, but in a different environment, where he can learn and progress in a much slower paced setting - more individual, more attention for him.

-  We've had our setback. It's OK. We all lived. Now, if he decides he wants to play Squirts (U10) and doesn't make a team, it won't be the end of the world. He will have those tools to accept and try something else, or to try and keep trying until he succeeds, or doesn't and either way, he'll be ok.


Life goes on and it's just a game. And sometimes the lessons you learn from not making the team are as important as the ones you do by doing so. Now he gets to play anyway, for fun. Isn't that the way life should be? Play for the love of the game.

Finding A Place

Having a child with autism grants you a place in that community. There are many different camps within the autism community and many different personalities within each camp. We have been firmly in the recovery camp, that is, I believe there is a biological basis for the symptoms collectively described as ‘autism’. I further believe that those symptoms are a reflection of a body that has lost the balance of health – where there are odd immunological responses to what should be benign substances. I don’t know what causes this. I also think that the cause can be different for each child. This, in my mind at least, is one possible explanation for why some children, supposedly with the same disorder, present so differently. Autism is a very loose diagnosis once you realize what is missing from the diagnostic criteria and it has become more so with the adoption of the DSM 5.

Anyway, once you’ve chosen your camp, what then? Well, in our case, we have worked towards recovery and we’re almost there.

Our son doesn’t have –

Repetitive behaviours

Insistence on sameness or routine

Sensory issues

‘Meltdowns’

Avoidance of social interaction

He still struggles with the finer points of verbal interactions and he does love to talk on the subject of his choosing, but, this, I have no doubt will also improve. He demonstrated great use of sarcasm the other day with my sister. He has friends and loves to be with other children. He doesn’t care if our schedule deviates from what he was told. All of those core autism symptoms are pretty much gone.

We are thrilled with his progress. More than thrilled. But, it puts us in no man’s land.

I cannot identify with families with children with autism anymore. Those families who are still dealing with so much. They have sensory issues, meltdowns, behaviours that we’ve never seen. I find myself getting further and further away from it.

I feel like a fraud in these groups. It feels wrong. I feel out of place.

Being an autism parent though and having gone through what we have, I also don’t fit in the typical camp. Our son does have differences. My parenting experience has been so vastly different to those parents that I feel like a fish out of water. My experience on this journey has taught me so much, but at the same time, I cannot unlearn what I have acquired. I can no longer trust our government scientists. I will never be able to vaccinate my son as if none of this had ever happened. I cannot go back. Nor can I ever switch off my ridiculously alert state. I am constantly on watch watching for children who are unkind or bullying – those that notice that our son still has some differences and move to exploit them. Sadly, there are some children who are so politically adept even at a young age that they will.

Visiting with friends from my college days has reaffirmed how different we all are. Some of them are so blissfully ignorant of anything we have experienced. Not that I would wish any of this on them for a second, but, I rather wish I could acquire a memory charm and forget it all. I wish I didn’t even have to consider how the pharmaceutical industry is a nasty, toxic lobbying giant buying off our elected representatives to mandate us buying their products. I wish I could go back to that camp where I didn’t have any reason to question their ‘life-saving’ role in medicine.

When is the government going to start acknowledging that these children are actually sick? When are they going to do some real research into biological mechanisms for both development and reversal of autism? When are they going to realize that caring for these children is going to break their precious budgets.

I also am incredulous at the so called neurodiversity movement. Frankly, the self-advocates out there only represent themselves. They are happy (although in so many cases barely functional on a social level) and good for them. But, to represent that no-one should have access to therapy because they don’t want it is absurd and of course indicative of a complete inability to see another perspective, a core feature of Aspergers. So, not surprising really.

Anyway, back to our strange reality. We are lucky to have friends with children who have some quirks themselves, not enough to qualify for a diagnosis, but, this experience has awoken these parents to understand our situation in a way that autism parents who stick to the book for their approach or those with neurotypical children can never do.

But, this situation is a lonely one. We have friends and family with neurotypical children that will never understand the heartbreak we have suffered, the worry we’ve endured, the work we’ve done. There are many of our son’s friend’s parents who simply don’t know about his history – nor will we disclose it until we’re absolutely sure it won’t affect their relationship with him or us. We also have friends with children who are so severely affected that it feels wrong for us to claim the same diagnosis. Our children are so different. At least though, we have an empathy for their experience that those with unaffected children simply don’t have. Not because they’re callous, but because they just haven’t experienced it. They’ve never had to try and comfort a friend who has so many things on their plate that they just can’t face the world. They’ve never had to try and find the words to express their sorrow when a friend loses a child. They never feel the dread of hearing about another wandering death in the autism community, knowing that there are at least 20 friends that could experience this tragedy first hand if they let their guard down for a second.

Oh for a place to call our own. 

Who To Support?

I get asked a lot about which charities are worthwhile to support during Autism Awareness Month.

Here's the first point - NOT Autism Speaks. They simply don't put enough of their vast funds raised into family support. Don't buy a blue light bulb. Don't donate to them. If they can pay their President (base salary over $370,000) a similar amount to what the President of the United States ($400,000) earns (they do), they simply don't need your money. Don't fool yourself into thinking you are doing anything for autism awareness or action by giving anything to them. You're not.

My first advice is to find an organization that is local to you. Find a non-profit that makes a difference in your own community.

Orgs in Colorado include -

Colorado Springs Therapeutic Riding Center
Pikes Peak Therapeutic Riding Center
Breckenridge Outdoor Education Center
Alpine Autism Center
PlayDate Behavioural Interventions
SPD Foundation


National Orgs I like -

Generation Rescue
National Autism Association
Safeminds
TeamTMR

Any of these organizations are worthwhile. They actually help families, which is more than a lightbulb will ever do.

Why We Need Awareness

So, over the years, my attitude towards awareness has changed and evolved.
When we began our journey, I felt that we needed awareness, for the sake of my son, so that people might think before judging him, or me, based on his challenging behaviour.

Then I went through a phase where I was so hopping mad that I felt that every time I heard calls for "awareness" I felt that what people were asking for was acceptance. Acceptance though can go two ways. Acceptance of the person, absolutely. Acceptance of the reality that autism is somehow normal, never. Acceptance of the ridiculous discrimination, challenges, denials of sickness, absolutely never.

I feel like I'm starting to come to a balanced opinion. I can finally see past the blue puzzle pieces that stand for fundraising and money going to pay for celebrity campaigns whilst offering no help to families.

Our cause needs awareness. It needs for people to recognize how many affected children there are out there. Awareness for the shear numbers. Awareness of how those families are struggling. Awareness that comes with awakening. People need to bloody well WAKE UP!!! If not out of compassion, then out of financial concern. The country cannot afford for so many children to need such expensive interventions. Schools are at breaking point. Parents are at breaking point.

Our schools need awareness. Our children are everywhere. Teachers need the tools to be able to educate these kids in spite of their challenges, because they aren't going away.

The medical profession most of all needs awareness. They need to recognize that there are indeed things THEY can do to help these children, without resorting at the first appointment to a prescription for risperdal.

Our government needs awareness. They need to be asking questions as to why the numbers keep climbing with NO answers. What causes autism? How many children recover? How many children are truly affected. Why do the cases present so differently? How do we get answers? Why the proverbial dead horse of genetics and eye gazing keeps being flogged?

It's time to get serious. It's time to really look at these kids from a true biological perspective. There was a study not too long ago that found that some children with autism could be grouped into subsets. Are we really dealing with autism or autisms? If that's the case, we need to be figuring out which autism children have - could it open a door for treatment and recovery, even for a small percentage of children?
Why do these children have immune problems? Why do they have food allergies? What is going on from a GI perspective?

Let's make this upcoming Awareness Month both Awareness and Action Month.

It's time for answers.

Routine..

When a child is diagnosed with autism, or a spectrum disorder, one of the first things you are likely to hear as a parent is "Children with autism need routine".
Parents are encouraged to keep their lives as predictable as possible, to avoid meltdowns and problems processing the change in schedule. We are encouraged to have visual charts to show our children what is happening each day, each week.

Here is my experience with this, and please note, this is not for all children. Some truly do need routine to be able to function. Some kids just have too much going on to even begin to cope with another piece of their world falling apart. But, please, do not buy the line that "all children with autism NEED routine". Some of them can be taught to cope, to adapt, to roll with it.

When our son was diagnosed at 2, we were also fed this line. I considered our life - that of a military family - as well as both mine and my husband's personalities. It wasn't an option for us. Military families move on average every 2-3 years, and indeed just a month after our son was diagnosed, we were due to move again, for just 11 months, after which we would be moving somewhere else. New schools would be the norm for him, including new teachers, therapists, friends, houses, climates, states and doctors. I am a pretty poor planner and a terrible procrastinator, which tends to mean that things get done when they get done, often at short notice, or at the last minute.
So, considering all these factors, I proposed to do exactly the opposite. I would sabotage our 'plans' as often as I could, without causing havoc. I would tell my son we were doing something, then throw in an errand, or say "change of plans", or just 'forget'. Sometimes he remembered when I did this, often in fact. We would just make 'firm' plans to make it up, especially if it was something fun. We would talk about how sometimes things just didn't go to plan.
Sometimes he got upset, although this decreased quickly. After about 18 months, he would get in the car and ask "where are we going today?". I considered this a victory.

Don't get me wrong, I'm not advocating for people to become parenting flakes with their children, but, children (and some adults) need that horrible, valuable life lesson that sometimes plans don't work out. Sometimes people don't show up for parties or playdates. Sometimes things get cancelled. Sometimes you want to cancel. And that is ok. As my son says "It's not the end of the world, mum". Life doesn't fall apart because you said you would take your child swimming at a particular time on a particular day, and well, you just didn't get to it. By insisting that routine is the only way to live gives you an exhausting, unattainable standard to live by.

ABA therapists talk about 'generalization' a lot - that is, the transfer of skills across people and situations and this is a perfect example. If your child has issues when they get a new teacher or a new therapist, what do you do? You cannot insist on 'sameness' so that your child doesn't have a bump in the road. You work through it. Our old therapy office had a great system. The kids would rotate through tutors in timed blocks, so, they were exposed to all the tutors at the center, which was good for the kids and also great for the tutors, since all kids with ASD are so different. Of course, some children might need a little more hand holding through the process than others and some might need to work it slower, especially if they are used to a very consistent routine. But, the reward of having a child that can fly by the seat of his pants and have a little more spontaneity is just amazing.
Give it a try.... :)

Vaccination Bullying

The bullying I've seen both in the media and on Facebook lately regarding vaccination has been horrific. From a case of measles at Disney that has spread to less than 200 people total around the country, the response has been absurd.
Measles, you know, the disease most of us had as children, which involved some spots, a few days off school and lifelong immunity. Not to say that there aren't sometimes complications, but, on the whole, for healthy children, measles is not a problem. I even had it myself. Not dead yet.

But, the response and vile comments from the public at large would have us believe it is something more akin to Ebola.

Also being debated on every news show is the issue of exemptions from vaccination for school attendance. Most states have multiple exemptions available to children and their parents.

It seems, the common consensus is that unvaccinated children are a public health menace and need to be quarantined, their parents fined or even jailed and them forcibly inoculated. Yeah, seriously. In the "Land of the Free" and the home of the "Brave", grown adults are advocating for parents to be jailed for deciding that the MMR vaccine is too much of a risk for their child, regardless it seems of any concern for that child's other medical issues. Where do we live again? North Korea? Did our children suddenly become the property of the state? Did our rights as parents disappear? Are all parents who decide they aren't comfortable with a particular vaccine complete idiots who must be removed from that responsibility immediately to save the human race from immediate destruction?
What a load of absolute nonsense.

The general picture being painted by the media right now is this -

- Measles is a virulent deadly disease that had been wiped out and now these unvaccinated children are bringing it back and it will kill any child it comes into contact with.
- The MMR vaccine is perfectly safe and perfectly effective. Vaccine injuries are massively rare. In fact unheard of, because when something is perfect, there are no problems. Ever. Get your kid vaccinated. Now.
- Parents who don't vaccinate are evil and want your child to die from measles or some other horrific disease. They must be stopped. They are dangerous and shouldn't have children. They are the "anti-vaxxers". And they are stupid and misinformed.
- Andrew Wakefield started this and is the devil.
- Anti-vaxxers are Wakefield devotees.
- Measles will kill your child. Get them vaccinated.

It sounds ridiculous, no? But, turn on most news stations and that's pretty much the picture that will be painted.

So, a few comments from yours truly on this subject and a few of these points,..

- Measles IS a very virulent disease, but it has never been truly wiped out and there are cases in the United States each year. Don't believe me? You can check the CDC numbers for yourself. Unvaccinated children however are not always the cause. Measles is not spontaneous, it does not just appear. It could've come from a child or adult from another country, or from a child or adult that travelled to an area where measles was active and brought it back to the United States. Additionally, the MMR is a live virus vaccine, which means that for a few weeks after vaccination, children and adults can transmit the virus to others. This is not my opinion, it is a fact. Measles rarely kills healthy people. Indeed, there hasn't been a death from measles in the United States for 10 years.

The MMR vaccine is neither perfectly safe nor perfectly effective. Why? Because nothing is. There are risks with any vaccine. Are they rare? Yes. Mostly. Although, it has been estimated that the real reporting numbers for vaccine reactions are approximately 10% of the actual reactions that occur. So, maybe they're not as rare as you might think. The US government actually set up a whole separate legal process for vaccine injuries, so, clearly there must be a need for it. They pay money to families who have a loved one who is injured or killed (yes, I did say killed) by a vaccine reaction. If vaccine reactions are so rare, why do the vaccine manufacturers need a separate process (in closed hearing rooms not open court) for claims against them? Why the secrecy? What the media doesn't report too often on in the mass hysteria we've seen recently is that many cases are in vaccinated individuals. So, the vaccine doesn't always work and produce the protection it is supposed to. But, let's be clear here, with every vaccine comes a risk and it comes with no guarantee that it will protect against the disease itself. Additionally, the immunity from the vaccine does not last forever as it does when you actually get the disease, it is temporary and it varies for each person.

Parents who don't vaccinate are evil. Well, yes, sometimes. Aren't we all? But, here is the truth. Try talking to parents who don't vaccinate and ask them why. Instead of wondering where their 666 tattoo is, talk to them. EVERY parent I know who either no longer vaccinates or who has chosen a different vaccination schedule has usually reached that position by experience. They almost all started as believers in vaccination. Then something happened to their child. They saw their child get sick, maybe develop seizures (which are listed as adverse reactions to vaccines), maybe the child developed gastrointestinal problems, maybe they were listless or screamed after the shot, for days on end. Maybe nothing major happened, but the child gradually got sicker and sicker, picking up ear infection after ear infection, developed awful diarrhea, maybe they stopped talking, maybe they stopped responding to their name. The parents saw a sick child and asked for help. As someone who experienced many of these issues, including a head growth surge in infancy that was NEVER mentioned that it could be a vaccine reaction (it was) by a pediatrician, let me tell you - when your child gets sick for no reason and then starts going backwards and all the doctors can tell you is that it's "definitely not the shots", frankly, you don't believe them. You realize that your child's immune system has something terribly wrong and how on earth can adding more vaccinations be a sensible option for a sick child. Even the vaccine inserts instruct against vaccinating a sick child.
Here's the truth. Parents who don't vaccinate are terrified. Their children are sick and they more than anything, don't want other parents to experience the same. No-one would wish their experiences on anyone. Whilst they are terrified, they are not crazy. What do they gain by saying "be careful, take your time, don't vaccinate when sick, don't use tylenol"? Nothing. They gain nothing. Whereas, your pediatrician gains, the pharmaceutical company gains, the patent holder gains. Who do you trust more? Just asking.

Some of the smartest people I know have stopped vaccinating, or changed the schedule, or selectively vaccinate. I'm talking lawyers, doctors, teachers. Not your average imbecile. Many of the parents I know have at least a bachelor's degree and many have postgraduate degrees. They are educated, rational, reasonable people.

No-one wants anyone's child to get sick from a preventable illness, but, as parents, our first responsibility is to OUR OWN children. They are sick, they are those children who cannot be further vaccinated. Trust me, an outbreak is the last thing anyone wants. But, right now we have a far bigger epidemic on our hands and it kills daily. It's called autism. These kids wander and drown all the time and yet, what makes the news? Not the little guy found in a pond, but the outbreak of a disease that hasn't killed anyone in 10 years at Disney. I don't understand it and I regularly wonder if I'm living in the Twilight Zone.

For those who shout about Andrew Wakefield, the vast majority of the people have NEVER read the paper he wrote. It NEVER said MMR caused autism. It said that the children with autism had bowel disease and the parents had reported onset after vaccination with MMR. Go ahead and read it for yourself. I'm not lying to you. It called for further investigation into bowel disease and MMR. Interestingly, bowel disease is now one of those things that even the AAP recommends investigation for in children with autism, because it is so prevalent in the condition. My own son had horrible bowel problems. The parents who witnessed these problems in their children went to Wakefield, not the other way around. Additionally, Wakefield is NOT anti-vaccine. He actually recommended that if parents are concerned that they vaccinate with each component of MMR separately and space them out, although, he doesn't support the mumps vaccine. Why? Because mumps is a risk to males of reproductive age. If males get mumps whilst a child, it gives lifelong immunity and does no harm. Our problem now is that the MMR wears off right around the time of when mumps could cause reproductive damage to males.
Merck's response to this? Instead of saying "we understand parents are concerned and we want to show we support choice and flexibility in the schedule", they discontinued the single measles vaccine. Nice huh?

Many parents saw issues with their children before the paper came out. Many people of this generation hardly know what the fuss is about. We saw some problems with our son prior to MMR. I don't think MMR helped though. His immune system was already crashing and MMR pretty much finished it off. It's funny that people say that these so-called anti-vaxxers are Wakefield devotees though, since, he's not anti-vaccine.

- Measles will, in all likelihood, NOT kill your child. Stop panicking. We panicked less over a potential Ebola outbreak in this country than we have over measles. Ebola really does kill.

So, here's my little summary on this and I'm going to bullet point it for you.

- Stop with the hating. We all make different choices that we believe are best for our children.

- Want to vaccinate on schedule? Go ahead. I really don't care what you choose to do because your children are your children. It's your right to do that. We vaccinated on schedule, until our son got sick.

- Stop with the absolute illogical argument that the unvaccinated are a risk. If anything, it's the other way around. They are the ones AT RISK. If the vaccine works, your children are protected, you have nothing to worry about. If it doesn't, well, take that argument to the vaccine maker and try and get a refund. In the meantime, my child is at risk from yours.

- Stop dragging up Wakefield. Please. It's old news. There is a proven association between GI issues and autism. Just ask the AAP.

- Have some compassion for parents who have children with special needs, whether from vaccine injury or not. Their lives truly suck sometimes. The last thing they need is to be patronized by those who have escaped the difficulties their children experience on a daily basis.

- If you don't know anything about autism, or don't have a child with autism, then please, shut up on the issue of 'vaccines don't cause autism'. You don't have a dog in the fight. You have NO clue what these parents saw, or no idea how they struggle, or of the guilt they feel. Don't pile on.

- Use the old saying your mother (hopefully) taught you - "If you don't have anything nice to say, then say nothing". Please. Don't spout off some hateful judgmental nonsense just because you can. Think if you would have the guts to say that in person. If you don't, then, stop yourself.

- Don't assume that parents who don't vaccinate are anti-vaccine. They're (we're) not. We just don't feel it is a prudent choice for OUR children.

- Accept that live virus vaccines shed. This is fact. It is science. If anything, a vaccinated child or adult) should be quarantined to protect others, since for about 3 weeks, they are a walking transmission factory. Live virus vaccines include flu (intranasal), varicella, vaccinia (smallpox) and MMR.

- There has never been thimerosal in live vaccines, they can't, because it would kill it. So, if you bring up MMR, don't mention thimerosal in the shot, it's not there. Parents who have researched this know this and if you don't and you're trying to pick a fight, this is a sure fire way to show you don't have a clue what you're talking about. Also, thimerosal is still in some shots (multi-dose flu shot vials). It is also a neurotoxin, whichever way you look at it. If it's not safe to roll around in your hands, it's not safe to inject into people at all.

Want to know what we would do if our son didn't have issues? We would still vaccinate. But, given all that I know about his impaired immune system, we would go slowly. Very slowly. We wouldn't bother with Hep A or B. We would never do a flu shot. We would not have done rotavirus. We would delay MMR until after the age of 4. We would still not vaccinate for chicken pox.

We are not the devil, really. We are just parents who were unlucky and our kids crashed. And we're struggling to get back to normal. Instead of attacking us with nonsense, try having some compassion and support our choices, as we support yours.

Parents - here's my advice. If the news out there right now is getting you down, honestly, the best thing to do is disengage from it. Or write a blog post to vent....


Finally, I moderate all comments. So, anything nasty won't be published. You'll be wasting both your time and mine, but, it's a lot quicker for me to press 'delete' than it is for you to type it. Again, if you have nothing nice to say.....

Division Helps No-One.

No, I'm not talking about a new Common Core problem (although I've been pre-warned this is coming...), I'm talking about division in the autism community.

I volunteer with an organization (have done for a few years now) and part of this involves moderating several groups for families with a child with autism. We have a rule - that providers are allowed to join some of the groups, but not allowed to advertise their business. The groups were started for families, by families, and we, as an organization want the support and recommendations to come from families. Why?

Well, imagine this. A family arrives in a new location and asks the question "Can anyone recommend an ABA provider?". They receive responses from multiple people, one saying that Company A has a great curriculum, immediately available tutors, a great center, another saying the same about another, Company B. They are both providers, working for the companies they have recommended. Then, you have a family member who comments that Company A has such high turnover with tutors that they have just left that provider. Now you know why Company A has available slots and needs a patient to fill that slot. For a child that maybe doesn't do well with transitions, such as a military child, that could be a major problem. Often, when there is high tutor turnover at a provider, it can be indicative of another problem. Maybe the training is inadequate. Maybe they pay lower rates than other local providers. Maybe there is a leadership problem and tutors are simply unhappy and leaving. None of this information would be told by a provider, so a family only gets the good points, not the bad. Not that we want people to simply moan about providers, but, we want families to get an honest impression and simply, when there is money involved, that doesn't happen. ABA providers are a business and are around to make money. ABA has boomed in the past few years and there are now so many providers and it is hard for families to tell which are good and which are the therapeutic equivalent of puppy mills. This is one way we try.

Anyway, during an occasional 'cleaning' of a group, I noticed a post that was basically a long business promo post, but disguised in a 'this is how we do ABA' informative framework. It was still clearly an advert, regardless of the probably useful other information it contained. It was deleted. Upon checking further down the page, there were numerous other business responses and promo posts, all of which also were deleted.

I had emailed the original person to remind them that providers weren't allowed to post adverts on the page, regardless of how they were worded. It was interesting how he responded, to the effect of  "I saw others posting, so I thought I would too - it seemed only fair". Of course, I wondered if he would do the same if he saw someone stealing a car, but, anyway, the entitlement irked me. Then, he proceeded to chastise me for having deleted his post first, before the others (which I was working my way down through). This provider has been used to having a monopoly in his area and is clearly irritated that his former employees, that are now his competition, had discovered a resource to post in before him. Either way, all the promotional posts were deleted and reminders dished out.

He then posted an article that, for someone with my views on autism (and I should add the philosophy of our organization, to respect all treatment choices), ie, its biological basis, irritated me further. It was this post. It's written by John Elder Robison, a well known, extremely high functioning man with autism. Don't get me wrong, he's got more experience to comment on what he, as a person with autism needs than I, who simply has a child with autism. But (and you knew there was one coming), he is one man. Ever heard the phrase "when you've met one person with autism, you've met one person with autism"? Well, precisely. He's advocating for what he wants. He believes in neurological diversity, that is, that people with autism are different, and that's normal and we should just give resources to where they are needed for accommodation. But, here's the problem. Every single person needs something different. Some need lifelong extensive support and healthcare management. Some just need kind friends to help them through life, as well as early intervention and nutritional support. Some need a little more extensive intervention early in life and then manage with limited support as adults.

Let's look at this another way. In the same way that people say we cannot do differentiated education because of the different needs (although I would argue with this piece that it is rubbish that it was written from the perspective that we should do 'good enough' for the average/struggling learners and simply only concentrate on the gifted learners), Mr Robison's suggestion is totally unworkable too. There simply isn't the financial availability to give whatever technological marvel has been invented to every child that needs it. Neither as simple is the case of managing other conditions he mentioned such as seizures, anxiety, depression. Seizure disorders are very complex and often difficult to manage. Anxiety and depression are not just fixed with a pill. Some of the medications used to treat these conditions have side effects that actually make the problem worse and induce suicidal thoughts. Let's also consider that the brain of someone affected with autism is different and thus medications don't work in the same way. So, whilst this is a wonderful idea of simply 'managing' all these problems, it doesn't really get to the real problem.

We still don't understand what has caused the explosion in autism, particularly among boys. His strategy doesn't consider that the data is continually showing massive rises. It's interesting that also, from MIT (although Mr Robison is not affiliated with the university), another researcher within a month of this article, came out with this news piece. In it is the dire prediction that by 2025 half of children will be affected by autism. HALF. Do you think Mr Robison's wonderful suggestions will be an option? No. Not even close. They're not workable now.

We don't put anywhere near the amount of money into finding both a mechanism for autism (or autisms) and thus even opening up the possibility of a future cure as we do into other childhood diseases or conditions that affect a fraction as many children. It's about time we threw everything we had at it.

Bringing this back to the poster in question. He had posted the Robison piece with a comment to the effect of  "Completely agree". Well, firstly, he would, as an ABA provider, because, let's be honest here, if you were a provider of ABA / autism therapies, and there was a mechanism to 'cure' autism, you'd be out of work. Your entire existence as a professional would be questioned.
I don't question that ABA can help provide children with meaningful progress in skill acquisition, but, does it 'cure' autism? No. It does not. The problem with being a touted local 'expert' on autism, especially in a forum where many of the families are new to the disorder, is that when you post an article like this, it becomes somehow gospel.

Society seems utterly oblivious to how the current levels of childhood autism are going to affect them and importantly, their taxes. They already complain about having to pay for things they don't use. Imagine when this comes along - when we have millions that are incapable of work, or even of semi-independent life, because, nothing could be further from Mr Robison's utopia of support than the current situation. Where health insurance companies are still not providing ABA therapy to children that need it. Those same health insurance companies also routinely refuse to pay for GI investigations or MRIs, or EEGs in children with unmanaged seizures. Where families seeking help and acceptance for their children find combative school districts and bullying, intolerant children and parents alike. The same children who will, like it or not, be paying extra taxes to support their classmates throughout adulthood.

The best hope we have is a mechanism and cure and prevention. That is exactly where our research dollars should go.

From a personal standpoint, I am utterly sick of the division in the autism community. Autism is not a quirky personality, or 'neurological diversity'. It's a disorder. It's even called a disorder.

ABA providers are often part of the problem. In their desperate need to convince everyone of the worth of what they do, they arrogantly dismiss every other therapy, including those so much more well-established, such as speech and language pathology and occupational therapy. They deny the existence of sensory problems. They dismiss the possibility of comorbid biological conditions that might affect behaviour. They are probably the most closed-minded therapists I've ever encountered. And with that blinkered view comes arrogance. Most other therapists co-treat. They want to all be on the same page. ABA however seems to jealously guard its domain whilst decrying everything else as unproven or quackery. The sad thing is, they take families with them in their crusade to prove that autism is a behavioural disorder. Families that might have been open to other possibilities.

It's time for everyone to get on the same page and realize the rightful place of everything in the treatment and understanding of autism, since, in the grand scheme of things, no-one has the answers.
Perhaps it's time we all sat down and actually worked together, where families are not hounded and ridiculed for wondering if their child might be reacting to foods they're eating, or if they do have a bacterial problem, or whether they might be having sensory problems. Where professionals see a child with specific needs that maybe they can help, or, if they can't, maybe another professional can.

Or, maybe, just maybe, the reason that child has their hands constantly down their trousers is not behavioural, it's itching from a yeast infection...

Annual Reflections

New Year for me is a time of reflection. It's a time to look back on what we did last year, of what we achieved, of what we tried and the things we never got to.
2014 for our family was a very busy one, but one that was answer-packed.

The two biggest pieces of knowledge we learned regarding our son came in the latter half of the year.

- Our son has a pretty significant Lyme infection.
- Our son has folate receptor antibodies.

For me, knowledge is power. You can treat the things you find, but only if you look for them. You need to target your search, it simply isn't sensible to test for every condition known to man (and it's also crazy), but, you do a little CSI work and let the evidence lead you.

Since very early in our autism journey, I have learned to let go of the label. Our son has a collection of symptoms that together meet the diagnostic criteria for a disorder they call 'autism'. The main problem I have always had with this diagnosis is that it is unscientific. It is simply looking at a person and observing their behaviour. It includes no testing, no bloodwork, no genetic profile. Over the years, the DSM has expanded too much. Normal human processes such as grief can now be classified as a psychiatric illness indicating a need for medication. I reject this notion.
For me, behaviour is founded in physiology. Biology dictates behaviour. If you can figure out the biology, sometimes, you can improve the behaviour. Think of something as simple as a menstruation cycle - a person's behaviour can change so enormously for just a few days a month.

I have always taken the approach of treating the biological problems first, and in turn, we've been rewarded with an improvement in the symptoms called autism.

Well, over the past 5 years, we've seen a huge improvement in almost every area - in social skills, in self-awareness, in independence, in cognition, in behaviour, but most importantly - in health. Our son is healthy.

So, back to the past year's knowledge acquisitions.

We treated the Lyme, after discussion with several doctors. We didn't notice any changes after testing. That is both good and bad. It was great that we saw no negatives. I've heard pretty bad tales of people starting antibiotics for Lyme and their system crashing. We didn't see that. We also didn't see any gastrointestinal problems. We added a ton of probiotics afterwards (and continue them) to ensure that we don't get a yeast problem emerging after essentially wiping out our son's gut flora. Here's what concerns me about seeing nothing. Did we get the Lyme? Did it have any effect at all? I guess we need to just trust that we did and now be super careful to watch for any other symptoms that could indicate a lingering problem. One of our son's problems that tipped us off was knee pain. I can say that we haven't heard any complaints of knee pain, and that is something we can continue to monitor. If we see signs in the future, we can always re-attack.

We also switched our son from simple folate supplements (5-MTHF) to a blended medicine called Cerefolin, which contains 5-MTHF, N-Acetyl Cysteine and the Methyl form of B12. It's a little bit of a dream pill, aside from the fact that I have to crush these monsters to get our son to take them in applesauce. Since increasing his dose of these, we have seem improvements in pragmatic language and social skills, which is interesting. More than this though is the comfort of the knowledge that this is not a shot in the dark, knowing that giving these supplements is warranted in quite a big way. We've been dosing some form of activated folate for a long time and increased it when we learned of the MTHFR genetic variations we both carry, We've always seen improvements with it. It's nice when the gains increase and continue.

I've heard so many things about autism over the years. As time has gone on, my belief in a biological basis has only been strengthened and I do not see this changing in the slightest.
With time though comes a disregard for how others' comments affect you. When we started this process, I felt self-conscious. I doubted. I wondered if we were indeed delusional, sad, unaccepting, unloving, desperate for a child other than our own. I took each attack on biomedically engaged parents personally and I would respond. Now, I don't. I know that the ultimate love for a child guides a mother who wants answers. I don't doubt our approach. Not for a second. The proof stands in front of me. A child who was diagnosed with moderate to severe classic autism just a few years ago played in a hockey tournament this past weekend. He scored 2 goals in his first game of 8 in total over the weekend. Not a 'special' league. A regular ice-hockey team. If I'm wrong, then I'm just the luckiest person on the planet. My son makes me so incredibly proud. He's funny, engaging, imaginative, expressive, loving and social. He's so much more than a label given by a lazy doctor 5 years ago.

If you are even thinking about a biomedical approach for your child, do it, please. Make it your resolution to try something new, because, at the end of the day, you will not move mountains with behavioural therapy, even if it is somewhat helpful, because, whilst biology can determine behaviour, behaviour cannot alter biology. Look at the cause, not the symptoms.

My wish this year is always for answers and progress. For our family and for yours.

Happy holidays!