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!