Somewhere over the rainbow

As I was reading an article today on 'The Over-Diagnosis of Autism', I began to feel more and more frustrated and angry. The claim was that pediatricians in NSW are deliberately diagnosing non-genuine cases of Autism so that schools can access funding. Now this is a double pronged sting for parents like me.

I highly doubt that pediatricians are genuinely doing what the article claims and simply exaggerating learning difficulties to be able to diagnose Autism. For one it's exceptionally unethical, and secondly, unless the rules are very different in NSW to Victoria, most the children wouldn't qualify for much aide time anyway, merely off the back of an ASD diagnosis. You see not only do you have to drag your child through a harrowing set of assessments to gain a diagnosis in the first place, to qualify for aide time, the numbers need to be quite severe.

Articles such as this perpetuate the inane and stupid comments and thoughts that harm families like ours. Silly claims such as Autism is the new 'flavour of the month' and is 'the new ADHD of the decade'. Insinuations that we can, and would, just walk in to a doctors office and say "Hi, please diagnose my child with Autism" and get a response like "Sure, and while you're here, here's a huge wad of cash." Let me assure you once and for all, there is no free ride for kids on the spectrum, and diagnosis' and aide time are not handed out like free cookies.

For any pediatrician who is genuinely doing this, they should not only be stripped of their medical licence, they should be shot. Not only does it put an additional strain on the already scarce amount of government funding available, it cheapens the pain and trials that parents like myself go through every day. Yes, over-diagnosis can be an issue, and it certainly did happen back in the late 80's and early 90's with ADHD/ADD but I can once again be sure it wasn't for some mystical great pool of free money or aide time. These days for any diagnosis, even ADHD, the rules have changed and the hurdles are set that much higher as a consequence of the past abuse.

If Autism is supposedly "the new ADHD" and so popular, why is it that parents are still getting diagnosis' of ADHD today? I can just imagine it now in the pediatricians office "I think your child has ADHD" with the mother replying "Oh no! That's too 90's, give me Autism, that's what's cool!". Also how come children on spectrum commonly have a double diagnosis of ASD and ADHD? I bet you think they wanted to be double cool and get twice the money.

There is nothing "Cool" "Hip" or "Very now" about Autism at all. Parents with children genuinely on the spectrum struggle every day to fight for what they need for their child and still quite often can't obtain it.

The evils of Autism

One of the pitfalls of the fact that there is no cure for Autism is that it leaves it open for almost anyone to offer a 'solution' no matter how dangerous or crazy. Now we all like to think that we're smart and can pick a bad idea when we see one, but the problem is that even the dangerous people have become smart and figured out how to appear scientific and sane.

There are all manners of 'whack jobs' out there who will offer you just about anything for a share in everyone else's fortune, but if even the dangerous people have 'doctors' and 'scientists' on their side how do we pick it? Good bloody question.

One of the highest profile dangerous people in regards to Autism is Jenny McCarthy. She is dangerous for a lot of reasons: She is perpetuating the myth that vaccines cause Autism for one thing. Now I don't use the word myth lightly here; it has been studied to a great depth of detail now and there is no scientific link between Autism and any of the vaccines. Period. In fact the man who gave 'credit' to this great lie, Andrew Wakefield, has indeed had his medical license revoked on account of performing medical fraud.

Now until the Autism mystery is solved, people are going to want something to blame and vaccines are a very convenient scape goat. They have preservatives in them that a lot of people don't understand and Autism symptoms typically begin to appear not long after the age a child typically receives their MMR vaccine. This ladies and gentlemen is what they call a coincidence. There is no great conspiracy. Most the Australian vaccines have in fact been Thiomersal free since 1999, but the number one thing you'll hear anti-vaccine supporters harping on about is Thiomersal. Millions of children die each year from preventable vaccinable diseases. Anti-vaccine grand standing is destroying herd immunity and killing babies who aren't old enough to be vaccinated yet. But as long as you sit in your ivory tower with your superiority complex and bullshit herbs from your homeopath, I'm sure you're fine!

I'm strongly starting to believe all anti-vaccine supporters should be shipped off to 3rd world countries like Somalia where vaccinating your child is only something the rich can afford to do. See how long them and their beliefs in 'all natural' survive there. At least that way you're not contributing towards chipping away at our hard earned herd immunity.

Our good friend Jenny doesn't stop at just promoting anti vaccination though, she also advocates for Chelation Therapy. Chelation Therapy involves a series of intravenous infusions of a mixture of chemicals (usually EDTA). The theory is that these chemicals bind to heavy metals in the body (such as Mercury) and help the body pass them. What some people don't realise is that the Chelation chemicals themselves can be toxic or significantly harmful, especially to a child.

So surely by now you can see how an all encompassing approach of "I'll try anything once to cure Autism" can be extremely dangerous. Yes, all people have a right to be heard. Voice and opinion is important, but we have to be able to apply a nutbaggery filter in order not to endanger our loved ones. How can we effectively do this with the evil ones claiming 'science'? Lots and lots of research and keeping a look out for one word: Cure. Because surely by now if Jenny McCarthy had have in fact cured Autism, she would have been given millions of dollars; not killed hundreds of innocent children.

http://www.jennymccarthybodycount.com/Jenny_McCarthy_Body_Count/Home.html

Autism: A picture or 1000 pieces?

Autism is a tricky and complex disorder, and I can only imagine growing up as a child with Autism is challenging. Unfortunately, a lot of people with Autism end up with a secondary diagnosis. It doesn't really invalidate the original diagnosis, supersede it or make it any easier or harder; it just highlights the child's challenges.

Common secondary diagnoses for Autism include: Intellectual Disability, Sensory Integration Disorder, Attention Deficit Hyperactive Disorder, Epilepsy, Oppositional Defiance Disorder, Anxiety, Obsessive Compulsive Disorder, Tourette Syndrome, Gender Identity Disorder, Language disorders, Dispraxia/Apraxia and many more. These conditions are often refereed to as co-morbid conditions, as they are not the main condition, but can contribute towards it.

While each additional diagnosis means the child has yet another burden to bear, do we break down the puzzle and look at every individual piece? Or do we look at the whole picture that little bit clearer?

A common theme I'm noticing especially in online places is for parents to list after their child's name all the diagnosis' the child has been given. Much like Arnold Rimmer BSC, SSC or what have you, you might see Alex ASD, ID, SID. Whilst I can understand on today of all days (when we have been handed two new labels of Severe Expressive Language Disorder and Severe Receptive Language Disorder) how each new diagnosis can be extremely distressing, surely the Autism badge is a heavy enough badge for your child to be wearing without all the extras. Also, are they genuine extras? Would your child still have these if they did not have Autism? Or do these extra pieces of information help describe your child's weaknesses?

Every child with Autism has a different sort of Autism, a flavour if you will. Each person's Autism is made up of so many different aspects that affect their life in a certain way. Autism without a language delay is usually Aspergers. If little Johnny down the street didn't have a language disorder and Sensory Integration Disorder, would he have been diagnosed with Autism at all?

While I think it's important for us as parents to know which aspects of their child's Autism are affecting them the most, I think it's also important not to get too bogged down in the detail, and look at the bigger picture.

The cost of ASD

We've got into some pretty nasty debt over the last 12 months getting our son diagnosed with Autism. I had originally thought by this time this year we'd be relatively ok and able to stop spending and get some of that debt down. What I didn't take into account was the fact that the cost seems to be almost as ongoing as the illness itself. By September last year we had already reached our Medicare Safety Net and we hadn't even reached the point of diagnosis.
The diagnosis came and it was time for us to take the next step; Early Intervention. As it turns out, all the assessments we had done weren't enough; we needed another. Even though we were now armed with our special Medicare number that was supposed to make things cheaper, and over the limit for Medicare (this is supposed to entitle you to a higher rebate) we still only received about 50% back. We're done now right? Wrong!

Right near Christmas Alex had a 'seizure type event'. Now I use those words and the quotation marks because that's the best description the doctors could give at the time.
So far we had spent around $3-4k, so surely we're done now right? Nope, not even close! There's also 3 different tests that need to be done for primary school entry as well!

It's all too easy for those who are outside of our situations, and look at our $12,000 in FAHCSIA funding and the $110 a fortnight Carer's Allowance and assume that parents are trying to con their pediatricians into giving their child an ASD diagnosis for the 'free ride'. But I can tell you from this side of the fence, it's not even close to that!

When we crossed our Medicare Safety Net last year, most people's responses to that was "oh good! You'll get more back now" but not only did that not happen, but somethings were not covered at all. Report writing for example, does not have a medicare number, so even for crucial reports which you need for entry into programs, you don't get a cent back. Let me also remind you that you can't touch the FAHCSIA funding and you wont squeeze a cent out of Centrelink until you actually have your diagnosis, which believe me is no picnic. Also, to get to the medicare Safety Net in the first place, your medical expenses must exceed $1,500 out of pocket within that calendar year!

Even in our post funding grant days, we are very limited in choice and must select from predetermined providers, you can't use any more than $6,000 of the funding in a financial year, Carers Payment is means tested for low income families only and so it goes. Now I know to the average Joe out there $6,000 for a financial year sounds like a lot but when it's $130 an OT session, $130 a Speech Therapy session, and $170 a psychologist or ABA session, $6,000 doesn't last long!

On top of that is personal sacrifice. I have pretty much had the choice of stay at home and help my son or go back to work and to hell with trying to help him to improve. This isn't even a choice at all, even though Centrelink doesn't compensate me a cent for my potential lost income, Alex is at the most vital age for therapy to be at it's highest effectiveness. We are even seriously looking at selling our biggest asset, our house, and returning to renting so that we can live closer to Alex's school and cut down his commute time and our petrol bill.

So what is the real cost of ASD? I'm not sure there's a calculator with enough zeros on it to answer that question!

Learning to ask for help

There are many new skills we need to learn being parents. We learn how to bathe, feed and care for our child. One skill a lot of parents of Special Needs kids need to learn is asking for help. It's harder than you think. One of the things that often stops us is pride.

You don't want to look like a bad parent and you don't want to feel like a bad parent. Admitting you need help out aloud takes away a lot of pride and requires a lot of courage. Asking for help is basically admitting to whomever you are talking to that you are not coping with your currently available resources. But you know what? That's ok. It's ok that you're not perfect. Probability is you're doing a damned lot better than what you're giving yourself credit for anyway. Most people do have networks of friends, family etc. You often hear "if there's anything I can ever do...."

Sometimes it's hard not to feel hopeless. What could they possibly do? Babysitting may not be an option as your child may have a lot of anxieties when it comes to strange people. What if they had a meltdown while you were gone? Your friend or relative may not have the skills to handle a meltdown. There's also the fact that you are doing all these things anyway, so what does it matter if you do another. But we forget, eventually, the 'camels back' will break. You are only an effective parent if you are functioning enough to be one.

Even I shocked myself a few months ago when I found myself accidentally asking a friend for help. I knew I had a problem; a situation that was making my day less than ideal. I was coping with the situation, but there was definitely a much better solution than just sucking it up. I hadn't actually intended on asking for help, the conversation just worked out that way. Suddenly, a solution was found for my difficult every day routine.

If you are lucky enough to have a support network offering help, it's ok to ask for it. Even if you can't think of something the first day it's offered, if you find yourself thinking "you know what would make my day easier?' think about who could make it happen.