Monday, March 28, 2011

What is Autism? (Part 1)

[In recognition of April 2nd being International Autism Awareness Day I have written two very special awareness posts]

I still get asked this question more than I expected to so maybe it's time to clarify.

It is a neurological disorder, which means there's a problem with that person's brain. It isn't curable, despite what all the Jenny McCarthy nutbags of this world will tell you, there is currently no cure for Autism. It is possible however to 'recover' from Autism to a point where the person can easily blend in to mainstream society, get a job, live independently etc.

Not all Autistic children are 'little geniuses', quite often higher functioning Autistic and Aspergers children will have a passion,  a subject that they know everything about and can list off every single fact imaginable, but not every Autistic child.

Not every Autistic child is unaffectionate or can't stand being touched. While it was very well demonstrated in the movie Temple Grandin that even her own mother could not hug her, this is not every Autistic child. Our son loves cuddles and kisses.

Not every Autistic child is completely unable to speak. While there are non-verbal Autistic children, a large percentage can communicate to some degree. The Autistic diagnosis does in fact require a language delay, where for example a 4 year old may have the language skills of a 2 year old, but the language is not necessarily absent.

Autistic people don't necessarily 'stim' all the time and not all 'stimming' looks the same. Self stimulatory behaviour such as rocking, hand flapping, spinning is a very common Autistic trait, and they may do that some of the time, but they don't necessarily do it constantly. Autistic children can play with cars, trains, playdoh but it maybe a little different to other NT kids.

Not all Autistic people have an Intellectual Disability. There seems to be widely varying statistics (anywhere from 25 to 80 percent) on the number of Autistic people who have an ID, but if they do not have an ID, it doesn't mean they're not Autistic. Conversely, the majority of Autistic people do have a Learning Disability, where they can learn, but it might take 3 times as long for the information to sink in, or they can only learn in a certain way eg. Can learn visually with picture cards, but not just using words.

Not all Autistic people have gut problems. It is common that people with Autism do have additional GI tract problems which often result in their child needing to have Gluten free, Casein free, Dairy free diets, or just one of the above, but it is a select percentage which are affected, not all.

Not all Autistic people are anti-social. Some may enjoy social interaction. They may not understand the social 'rules' or be able to read body language. They may even prefer to interact with adults, rather than children their own age, but they are not necessarily anti-social.

Not all Autistic people are violent. While most Autistic children do have some behavioural problems, not all of them kick, bite, punch etc. A lot of Autistic children do 'resort' to violent behaviour out of sheer frustration of not being able to communicate, but Autistic doesn't automatically equal violent.

So then, what IS Autism? Part Two will be next Monday.

Monday, March 21, 2011

Grateful for the little things

I always found it odd reading books about going through the ASD diagnosis stage. There would always be a section about grief, where they warn you to prepare for the grief of losing all your original hopes and dreams for your child. It has been said in at least one book I've read that you go through all the same stages as if your child had died. Anger, bargaining etc. This really spins me on my head and makes me think "What the hell?"

I never went through any sort of grieving stage. I found out what the problem was, and I learned how I could best deal with and manage the disorder for the best possible outcome. But maybe I am a strange kind of alien mother who actually always accepted her son for who he is? I've only ever expected from him, the things he seems capable of. Of course, there's still plenty of time left in both our lives for me to be 'disappointed'; maybe he never will get married, but who's to say that has anything to do with the fact that he's Autistic anyway?

It's like finding out you're having a girl, deciding automatically they're going to be winning all sorts of pageants and then 'grieving' because you think your baby is ugly, or they have a birth mark. As parents I don't believe we get the right to automatically decide who they're going to be.

I think any parent who grieves for their perfectly healthy child's life is looking at the picture wrong. More than likely, with enough help and early intervention their child can achieve some truly brilliant things. Or even mediocre; what's the problem with mediocrity? I for one am stoked about the fact that my child is healthy and happy. Sure conversations are difficult due to his language delay and at times I do cry out of sheer frustration over how hard our daily life can be. There is plenty of 'why us?' and 'I wish I could know what it would be like to raise an NT child, I bet it would be easy'. But wishing will never change who our son is, and ultimately, I wouldn't change him for the world anyway.

Tuesday, March 15, 2011

The Consequence of Intelligence

As you navigate your way through the minefield of diagnosis and assessments you begin to find available services , and how your child can qualify. Early Intervention is a new marketplace which has recently exploded with providers giving the illusion of plenty of choice, but never enough places. Every parent out there must at some point approach one very important learning environment: Primary School.

There are all the usual options available, Public, Private, Independent etc. but there's two options most parents don't need to consider, Special School and Special Development School. One can not simply decide to send their child to either of these schools; their child has to qualify to attend. Parents are told their child must undergo an IQ test and admission will be based on this score.

The current admission system goes like so: Children scoring below 55 are eligible for SDS entry, children between 50 and 70 qualify for SS entry, and any child scoring 71 and above is forced into mainstream. Many parents of children in the latter category are left with nothing but the piddly amount of $12,000 of FAHCSIA funding, or to privately fund an aide and special help so they don't get left behind. While no parent would wish it upon their child to have a score below 70, the cut and dry situation of help vs. fend for yourself puts you in an awkward position.

While the government is spruiking the benefits of Early Intervention, they are leaving any child who manages to just cross the line out in the cold. It's enough to make any parent who spent all their time and money running around getting their child help before primary school regret their 'investment'.

Monday, March 7, 2011

The Waiting Game

The Waiting Game is a cruel and unusual game any parent must play while wading through our addled medical system for a diagnosis of ASD.

The goal of the game is simple: Get to the end of the game still alive, whilst retaining as much money and sanity as possible.

What most parents don't seem to realise is there are proactive things you can be doing while playing the waiting game. Usually there are large gaps in between making the phone call for an appointment and the appointment itself. There are things you can actually do in this 'dead time'.

The main goal for children under school age going through the diagnosis stage is Early Intervention, research your options in your state. Most programs take children as young as 2.8 years old. Most programs also require things you most likely don't have yet; diagnosis letter, Childhood Autism Rating Scale (CARS) score, Wechsler Preschool and Primary Scale of Intelligence (colloquially Wippsi) or Wechsler Intelligence Scale for Children (WISC) depending on how old your child is, Vineland Adaptive Behaviour Scale (VABS) but don't let that put you off. Waiting queues are long and there's a high probability you will have at least some of these by the time your child's name is at the top of the list. Yes that's right, fudge it a little, twist the truth. It also gives you an added advantage of knowing what tests to ask your psychologist for. The psychologist will pick from a standard subset to perform, that's fine, but if you already know you need a CARS score for a service you're on the waiting list for, you can make sure that it's done. Don't assume it's automatically included in the list of assessments he or she will do.

To find Intervention Services there are multiple places you can start looking. Books, Websites, Maternal and Child Health Nurses even give the Autism specific services in your state eg. Autism Victoria, Autism Queensland etc.

While you may have your 'first preference' as to which program you would like your child to attend, you should never put 'all of your eggs in one basket'. I recommend you put your child on a minimum of 3 waiting lists, ultimately, it doesn't matter if they're on the waiting list for 10!! Even if you start a less preferable program, and 3 weeks later your first preference becomes available, you can always switch, any program is better than nothing at all. I know we were on one waiting list for 10 months, and we only came off it after a completely different service came through with a spot. Use your time wisely. Before long your child will be knocking on the door of Primary School, where they'll need all the help they can get.