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.

R-E-S-P-E-C-T

Being a modern day Mum to any child right now is challenging. There are pressures all around you; pressure to appear as the perfect mother, pressures to return to work and contribute money to the household, pressure to stay at home and never miss a scrape or bump. The debate of stay at home vs. return to work will most likely never be settled but it's particularly important for parents of special needs children to acknowledge how much we already work. One thing that seems to be missing for a lot of mothers is respect. Respect for themselves and acknowledging how much we do work, and are not paid or recognised for it.

Take your average 40 hour a week job, I dare say that most mums who return to the workforce don't take on full time work, but let's just take this example for simplicity. Currently in my situation, my son attends an 18 hour Early Education Program Due to rising fuel prices and the stress of driving back and forth, it is easier for me to not come home during his school time. Now since teleports don't exist, I have to drive him there. Early morning traffic means it usually takes me about an hour from door to door and in the evenings, about 45 minutes as peak hour hasn't come into full swing yet. So for a three day a week program, we're already sitting at 23.5 hours. Alex has Occupational Therapy once a fortnight for an hour, so let's just simplify that to half an hour a week; 24 hours plus travel time equals 25 hours. We have recently  started an ABA program. So far the sessions have been 1.5 hours in duration, and then we have our ABA homework. I've decided to aim for an hour a day, so over the course of a week, that adds up to 8.5 hours a week. So now we're at 34.5 hours a week including travel. Weekly speech therapy bumps the total up to 36.5 hours a week. I spend about half an hour a day doing Alex's readers which brings it up to 40 hours, and I haven't even touched the housework!!

Let's not forget that stay at home mum's don't get sick leave. If we're sick, we have to either suck it up and carry on or find someone else to take them to therapy. We get no long service leave, no pay and no recognition; and let's not forget the snide comments like "it must be so nice to stay at home and play all day".

Recently on our trip overseas I felt so embarrassed and degraded when filling out forms on the aeroplane, when  I wrote in the occupation space 'mother'. Is that all I am? Someone's mother? Don't I deserve a little more credit than that? I know what they were really looking for; 'home duties' or the like, but I refuse to write that. I think from now on, I'm going to give myself a little more respect and write 'volunteer therapist'.

Words....

Words have the power to both destroy and heal. When words are both true and kind, they can change our world. - Buddha

Two words, two terrifying words that change both everything and nothing at once. Intellectual Disability.

"Intellectual Disability" is the term used in Australia to describe individuals who have impaired cognitive functioning manifesting before 18 years of age . The same condition is described as "learning disability" in the United Kingdom and "mental retardation" in the United States.

Intellectual Disability can range from mild to profound in severity, and like Autism itself, there is no cure. In Australia, roughly 3% of the general population suffer from some form of Intellectual Disability. In the case of Autism (Kanner's or Classic) , approximately 70% of Autistic individuals have an Intellectual Disability. The remaining 30% usually have some form of Learning Disability. In Australia learning disability and Intellectual Disability are two unique terms and should not be confused. An Intellectual Disability is more severe than an learning disability and is much more difficult to overcome.

But can someone with an Intellectual Disability still learn? In most cases yes. More than half the people in Australia with an Intellectual Disability are classified as 'Mild', and even though learning may take longer, take more explanation and may need added props such as visuals, they can still learn.

Our experience with Alex is it can take a while for information to be learned, but once he has truly learnt it, he tends to retain it. For example it took us approximately 6 months to teach him to recognise the full alphabet, now he can point out and recognise any letter and is starting to have some word recognition. We have been working on numbers for nearly a year now and he can recognise more than 20 numbers and can count to 10 with a bit of help and encouragement. Alex has bigger trouble with more abstract concepts though, for example, he only learnt 3 months ago the correct response to "What's your name?" is "Name is Alex".

We have a lot of hope for Alex and Alex's future but for now we have our daily struggles of aiding him to get dressed and undressed, bathing him, brushing his teeth, changing his nappy and so much more. The daily grind for us as parents to try and not only teach him information children 1 or 2 years his junior know, but to teach him life skills and subtleties of social interaction does become quite a labor. But it's a labor of love for one very special little man, who I believe has all the potential in the world.

[There will be no blog post on Monday 18th April, due to the fact we're overseas. The next post will be Monday 25th April.]

Welcome to Sensory Hell

My clothes annoy me

They've never done this before

I want to chew on everything

And it's not 'cause I'm bored

I wont eat my food

I just sit and stare

I can't sit still

I wriggle in my chair

If you take me to a noisy place

I'm bound to meltdown

If you try and cut my hair

I'll scream the house down

I really don't like it

When you wash my hair

Please don't take me swimming

I can't stand it there

I prefer heavy blankets

They help me sleep at night

When you go near an escalator

You'll need to hug me tight

Big firm cuddles

Really calm me down

I like to play with cars

And spin the wheels round and round

I get frightened when you vacuum

And I have to run away

I really can't help it

I was born this way

So, what IS Autism? (Part 2)

As previously mentioned, it's a neurological disorder. A problem with the brain's 'wiring' so messages can be slow and/or jumbled in getting through to the brain. Autism affects many different areas; Social, Behavioural, Communication and often the Senses. Autism is part of the Autism Spectrum Disorders including Aspergers, PDD-NOS, Rhett's, Fragile X and of course Autism (classical). It is referred to as a spectrum to attempt to illustrate how widely varying the disorder can be. An Autistic person can be profoundly both mentally and physically disabled, or in the case of Aspergers, be 'a little odd' but otherwise indeterminable from any other person in the 'normal' population. There is constant debate in the medical world over diagnostic symptoms and labels. There is fierce debate over whether the Aspergers label will stand alone in the new Diagnostic and Statistical Manual (DSM) or be absorbed into the Autism label, and whether 'high functioning' Autism really exists, and if and how it differs from Aspergers.

Common Social markers for Autism may include limited eye contact or avoidance, limited or absent social intuition, not being able to read social situations, cues and body language, may not point at objects or use hand gestures, can not read or understand emotions. In play they do not tend to seek out other children, often lack imaginative play and often play with toys in an odd manner. For example, one of Alex's favourite things to do is find every matchbox car he owns and line them all up perfectly in a row, all facing the same direction. When he has run out of cars to line up, he will often start a new line. If you try and disrupt the line, or try and make the cars drive normally, he will get very distressed. Rather than play with a truck or wagon 'normally', he likes to turn the wagon upside down and spin the wheels. He can do this for an hour or more.

A common Communication problem Autistic children have is delayed/limited speech. They may grow to have a more varied vocabulary, but still not construct full sentences, or give instructions. ‘Echolalia’ is very common in Autistic children. This means they can repeat language, but not necessarily understand the language, or use that word in their every day vocabulary. We can say to Alex "would you like a drink" and his response can be "drink" rather than "Yes". A lot of Autistic children have difficulty understanding and following instructions. "Give me the block and sit on the chair" may be too much for them to comprehend at once. They often find it easier if you keep it to short concise instructions. Autistic children may display repetitive language, repeating the same word or words over and over. Alex has a lot of difficulty with pronouns in his speech. If you say "where's your ...." or "would you like......" he often won't understand, where as if you say "where's Alex's ......" or "would Alex like......." he'll understand perfectly. He'll often even get that jumbled as well and when looking for his shoes he'll say "where's your shoes?" not "where's my shoes".

The most common Behavioural symptom in Autism  is repetitiveness. Autistic children are typically incredibly routine focused. Sheldon makes a shining example of this on The Big Bang Theory in that he can't possibly have Chinese on a Friday night because Friday night is pizza night or something to that effect. Routines must be carried out just so, in the correct order or the child may become upset or confused. Children may focus on one very small part of a toy with great intensity, either just spinning the wheel of a car, or getting down on the same level as the car and moving the car back and forth in front of their eyes, watching the wheels. Self stimulatory behaviours such as hand flapping, rocking back and forth and toe walking are also quite common.

Not all Autistic children have sensory issues, but most often they will. Some can't stand the touch or feel of certain fabrics on their skin, while with others, certain fabrics can send them in to a 'trance'. I've heard of more than one Autistic child who was entranced by corduroy fabric. He'd sit there, for hours on end just feeling the ridges. Some Autistic children are very sensitive to noises; loud busy places like shopping centres overload them, they run and hide if you turn on the vacuum cleaner and they're terrified by hand driers. Some Autistic children suffer from visual sensitivities; they can't stand fluorescent lights, and if a room is too busy with colours and pictures they can't focus. Smell can be another issue; some can't stand to be within 20 metres of the fish shop whilst others will insist on following you into The Body Shop and need to smell everything intently. Even taste/texture can be an issue with Autistic children. Some prefer very plain tasting things and will prefer to eat plain bread and chicken, others can't stand crunchy things like stir fried broccoli.

As you can see, Autism is no one particular behaviour or symptom. It's a varying degree of many issues, some of which I have not even mentioned. The most important thing is that we love and support these children and give them the understanding that they need.