Like all seven-year-olds, my eldest daughter Mia is full of surprises. One evening when she was four, I found her on the couch apparently whispering to the pages of an open book my mother had brought over. I got close enough to realise that she was reading it.

Hands up for acceptance and diversity.

This was the girl so afraid of the alphabet only a year before that she would put her hands over her ears and run from the room when Sesame Street announced its letter of the day. How would she ever learn to read, my wife and I pondered. It turned out that Mia taught herself. It was a lesson in turn for us – not least for me to remind my mum not to leave her trashy airport novels lying around.

Our world was knocked sideways forever the day Mia, when two, was diagnosed with an autism spectrum disorder. We were in denial, probably out of pure shock. Because we knew no better, we thought an autistic child was one who never said a word, was in nappies until adolescence and was completely locked in their own world and unable to engage with the outside one. There are certainly people whose lives are like that, but that was not Mia.

The first lesson we learned – that anyone learns – about the autism spectrum is that it is just that – an incredibly wide array of development disorders in areas such as social interaction and communication. It is not a mental disability, although it is to do with neural pathways in the brain. It is not malaria, mumps or measles; there cannot be one treatment for all because all cases are unique. Even Brisbane-based Englishman Dr Tony Attwood, who has done pioneering work on Aspergers Syndrome (Mia’s type of autism) for more than a quarter of a century, says of all the cases he has encountered, not one person has displayed 100 per cent of criteria.

So when I saw a recent newspaper poll asking if children with autism should be schooled separately, it struck me as odd. It’s like asking if food should be cooked, or whether coats should be worn. It depends, surely, on the food, the weather, the individual. Simply, some kids can cope with the tumble and rumble of mainstream school and some cannot. My suspicion that autism is still viewed broadly as a condition which necessarily means people should be shut off from society was confirmed when the poll result showed four to one that yes, separate schooling was the only prospect for these kids, for whatever reason.

We always knew it was worth aiming Mia at mainstream school. She had what they call social intent – the world and its ways confused and scared her (and still do) in many ways - but with early intervention in areas such as psychology and speech and occupational therapies, she has made enormous strides in dealing with people and coping with stresses and frustrations. Mainstream school is not a perfect fit, but she has a very supportive teacher who recognises her triggers and can usually nip pending meltdowns in the bud. Problem areas remain, and the tweenie/teenie minefields but a few years away appear daunting, but the more educated children and teachers are about autism, the more Mia and kids like her will feel accepted and able to fulfil potential.

Funding support for Mia is non-existent due to her not having an intellectual disability. If Mia had a teacher’s aide (now known as a Student Learning Support Officer) for a couple of hours every day, she would thrive. One-on-one teaching for children with autism is paramount to their learning. Alas, swingeing cuts to education budgets by the Newman and O’Farrell state governments to name but two make such measures all the harder to attain.

Having Mia in a mainstream school is not just a one-way street. Just as she is exposed to her neuro-typical peers and their (to her) curious nuances and rules, they are mixing it with someone whose behaviour is occasionally non-conventional. That broadens them. They will recognise that Mia’s buttons work differently, and when it is explained why, it is not scary. Their acceptance of diversity grows, and they become more inclusive. Concerns that autistic children are disruptive and violent are vastly overplayed; in an understanding environment that does not confront them, these kids usually present as quiet, shy, honest and diligent.

In the meantime, Mia, who is no Rainman but certainly brighter than average, continues to top her year academically. Perversely, the same condition which could be said to make her clever has also bestowed an almost-crippling fear of acclaim; the very prospect of being publicly lauded and applauded for achievement renders her overly emotional, exhausted and nearly ill with worry. School assemblies make her nervous – her class might win the weekly award for being the quietest, and equally unsettling is the prospect that they might not. Something as inevitable in life as competition will always cause more fear in her than it is worth.

We have recently started discussing Aspergers Syndrome with Mia and all the ups and downs it might bring to her life. She knows it causes the nasty frustrations that upset her but also that it made her hyperlexic (opposite of dyslexic). She loves spoonerisms and wordplay and told me the other day, giggling, that being a girl must make her an Aspergette. She’s cluey, but the one thing Mia Rose Kelly will never know is how precious she is.

Comments on this post will close at 8pm AEST.

Most commented

29 comments

Show oldest | newest first

    • Philip says:

      08:52am | 15/11/12

      I know some one with an autistic kid who, on the day he is due for assessments for which funding for aides etc is based upon, disrupts his routines as much as possible so his behaviour is as bad as possible and therefore qualify for the funding for that much needed support.

    • Colin says:

      10:07am | 15/11/12

      @ Philip

      And anecdotal ‘Evidence’ like that is one of the reasons that people are so suspicious of funding for those poor people afflicted with a debilitating condition that can often so easily be dismissed by laypersons (such as yourself) as ‘Bad behaviour’ or “Just a behavioural disorder’.

      Think yourself lucky.

    • Rose says:

      03:34pm | 15/11/12

      Unfortunately, even if your story is true I see it as a sad indictment of the system rather than of the parent. It may be that in order to get anywhere near the support the son needs the parent feels that they have to go to such extraordinary lengths

    • Gregg says:

      09:00am | 15/11/12

      Such a great good news story Brian and may your precious Mia continue to do so well and it seems you have her at a good school right now.
      I think as all students, whether with some form of intellectual surprise or not are different, so too can be schools.

      Hoping to have a good normal school reminds me a little of when having moved interstate with two young daughters we were living in a rural area and the girls attended a local rurally inclined school, so rurally inclined that whilst a change in expected writing standards from one state to another was one thing to contend with, it was a bit of freak out event to my wife when the eldest girl came home one afternoon and described her class visit to a near farm paddock dam to catch tadpoles!
      Once she settled down, I said it was just a practical excursion with a nature studies related aspect and so it was no big deal and has not appeared to harm the girls, both having gone on to undertake tertiary studies and make successful professional careers for themselves.

      My eldest girl btw I discovered early one morning ensconced in flicking through the pages of a magazine when I thought she was extra quiet for a change at about 12 months and not having awakened us.
      It was more the pictures and certainly I would not have thought reading at that age but both girls never had any difficulties with reading or processing information and books are great for that, maybe even better than resorting to computers which seems to happen more now.

    • Shi says:

      11:45am | 15/11/12

      My son taught himself to read before the age of 4.  Really reading, not looking at pictures.  It does happen.  The school actually looked into how he taught himself and found that he used patterns and they predicted that he would be good at maths.  He is 12 now.  He has not been diagnosed with autism but we believe he is certainly on the spectrum, only mildly though.

    • Carol Clarkson says:

      09:28am | 15/11/12

      Brian, this is a wonderful and beautiful story.  My friend and I have a lobby group, “Parents Pack a Punch”, which we set up after the introduction of the “Every Student, Every School”  Initiative in NSW earlier this year.  We have a facebook page and “IDEAS” posted a link to your story on it.  It encapsulates so much of what we stand for, not just for children on the Autism Spectrum, but for all children with special needs eg. disabilities, from disadvantaged backgrounds, with mental health issues etc etc.  Every one of these children is a member of our community, our society, why should they be segregated from mainstream schools and why shouldn’t they all be able to access an equitable public education?  Your letter is so heartwarming, many of our readers will be able to relate to it.  Please visit us and have some input, - Carol, Parents Pack a Punch!

    • Cin says:

      09:54am | 15/11/12

      Unfortunately the biggest problem you contend with when having a child on the spectrum is the lack of understanding from the teaching staff.
      One teacher my girl had, told me to my face “she is autistic and doesn’t belong in mainstream school” (this is before diagnosis!) we lost a year’s worth of education because of this nimwit (being polite here) same teacher was also disciplined and told to treat my daughter with care, compassion, understanding and respect…WHY IS SHE STILL TEACHING????
      The other problem is the expectation that my child (or any on the spectrum for that matter) should be able to deal with everyday school life in a quiet manner…seen and not heard…errr hello…have you read anything about Autism…many cannot control their meltdowns…or need to move about…or handle noise…infact if you just read my child’s file a little closer you’d realise it has been ongoing since birth…and as she’s 9…we still haven’t gotten to the point where she reacts to everything “normally”...

      Being treated as an individual in the education system would be the pinnacle of success for any parent of a child with special needs…many slip through the system…fighting all the way…and getting nowhere fast…leaving our poor children further and further behind.

    • Question says:

      10:42am | 15/11/12

      @Cin - whilst I agree that the teacher should have been more sensitive to the needs of your child, I am going to be a bit controversial here: You say “...expectation that my child (or any on the spectrum for that matter) should be able to deal with everyday school life in a quiet manner…seen and not heard…errr hello…have you read anything about Autism…many cannot control their meltdowns…or need to move about…or handle noise”. From the teachers perspective, why should your child not be reigned in when they are disrupting the entirety of the class? Especially when they are young, all it takes is for one kid to act out (continuous talking, getting out of their seat, etc) to incite others to do the same, and very quickly you will lose control of the class. Please understand that I am not attacking you or your child, and I agree that a form of compromise must be reached, but you simply cant inform a class of young kids that everyone bar this one person must obey the teacher - its an “everything or nothing” scenario. If you child is acting out in class, they must be appropriately dealt with lest they impact upon the other children there who are doing as they are told and are trying to learn.

      Again, please understand that this isnt an attack. I have never encountered an autistic child in my entire life whilst I was at school, so this is a learning experience for me. Im just trying to understand why autistic children should be essentially “allowed” to get away with behaviour that the other children would be punished for?

    • asdf says:

      11:35am | 15/11/12

      Cin, what about the other students right to learn? You realise the effort of the teacher in dealing with a special needs child takes away from the education of the rest of the class. Perhaps she doesn’t belong in a mainstream school.

    • Mr.Tiny says:

      10:38am | 15/11/12

      I had to get a lawyer to keep my son in school. He is a good, relatively quite kid who is not smart and they wanted me to send him to the special school which was right over the other side of town. Now after my lawyer gave them a legal nut kicking and he is in school (doing rather well in my opinion) I have child protective people coming over talking about whats right for my son.

      The whole thing just gets meaner and meaner but sending him to the special school when i don’t drive is just insane when there is a perfectly good school just around the corner.

    • Knuckle Dragger says:

      11:45am | 15/11/12

      Brian,

      Excellent story and rings just about every bell my wife and I had with our (now) eight year old boy.  When he was four, I was approached by one of his teachers at an Early Learning Centre who told me she had had some training in the field and thought we should have our bloke tested for spectrum disorders.

      Knocked us around, like you.  Then we had him assessed, only to be told there wasn’t any evidence of disorders by who we later found was an untrained beginner “assessment officer.”

      We’d done some research by then ourselves, and he was eventually diagnosed two years later.  He either loves or hates sensory issues, dependent on the day, but has made giant strides thanks to a supportive school environment.  His teacher can pick a meltdown coming, so on request he leaves the classroom and sits outside for ten minutes or so - then it’s all good.  We have other plans in place as well, and socially he’s 1000% on what he was not so long ago.

      The only word of warning I would have for parents with Autism Spectrum Disorder (ASD) kid/s - you HAVE to make some time for yourselves.  You just HAVE to, otherwise the process of caring for a lovely kid like this starts to define you as a person, and other areas of your life start to deteriorate.  I think we’ve got the balance about right now, though.

      By the way - if you ever need to identify over 400 dinosaurs by photo, and then need to know what they ate and whether they lived in the Triassic, Jurassic or Cretaceous Eras, let me know.  I have a little boy who can help you out.

    • Michael says:

      12:20pm | 15/11/12

      Thank you for taking the time Knuckle Dragger, appreciated.

    • M. Mouse says:

      12:50pm | 15/11/12

      It makes me so sad to hear people call it a “disorder” or talk of people “suffering” from Aspergers. It is a gift! You probably wouldn’t be sitting at a computer or enjoying the benefits of most modern technology if it wasn’‘t for Aspie types. I also taught myself to read by age four, I hate social occasions, I love anything that involves patterns (maths, music, languages), I am a classic Aspie in many ways, but I prefer not to have a psychologist stick a “disorder” label on me, though they did when I was at school..coming top in anything but not being a “normal” girl, apparently not wanting to get into bitchy cliques made me “Abnormal” and in need of counselling to try and turn me into a normal bitchy girly girl too.  Ugh!
      I am healthy, have a succesful career and a happy marriage. Just don’t take me away from my routine, tell me lies or draw attention to me in a crowd and I am probably a lot happier and fulfilled than “normal” people.

      People see the not being able to deal with the “normal” social behaviours which really involve a lot of lies and bullshit for the sake of being “polite”,  lies and bullshit to make other people feel good about themselves that Aspie types just can’t grasp because it is illogical and confusing, as some kind of “disorder”. I see it as the next stage of evolution, but each to their own.

      Please people don’;t try to change your brilliant kids into your idea of “normal” , nurture thier brilliance! If they dont want to go to some stupid kids party, dont force them!  If they want to stay up all night playing the piano or staring through a telescope, let them!! If you want a meltdown, stop us in the middle of something. If you don’t want a mealtdown, let us finish. It’s not that hard.

      Count yourself lucky you have kids that will always be totally honest.

    • lea says:

      04:34pm | 15/11/12

      @M. Mouse.

      Whilst I see your point about those on the spectrum being referred to as having a disorder or as abnormal, did you really have to belittle and insult others in the process of making your point?

      Labeling people as bullshitters, liars and bitches, implying that you are an evolutionary rung above them and implying they cannot be as happy and fulfilled as you does nothing for your cause.

      If you want respect from others, you have to be prepared to give it to others yourself.

    • TheRealDave says:

      11:54am | 15/11/12

      OK, I’ll suppose I’ll be the bad guy here - in order to prompt a discussion* smile

      Its all well and good to move children with ‘slight’ issues** into mainstream schooling but at what expense? Your average Primary school class, in a public school, has what….25 kids? ish? How much time can a teacher devote to one child at the expense of the other 24? Even with a ‘slight’ issue?

      How many resources need to be diverted from a schools budget for a small number of children? Teacher Aids and extra staff training doesn’t come for free. School budgets are pretty tight. What does a school have to sacrifice?

      In an ideal world we could cater to ALL needs. But I think we are all mature and adult enough to realise that we do not have a never ending source of funds. Lines have to be drawn. Kids with ‘issues’ do have specialist facilties for their care and education that will cater to their specific needs.

      *a rational discussion hopefully (I can dream can’t I??)
      ** I use ‘issue’ as a global reference to a vast array of disabilities/impairments/difficulties/etc not as anything derogatory or to ‘gloss over’ any particular issue.

    • Ally says:

      12:02pm | 15/11/12

      It seems obvious that there are real benefits for special needs kids to be included in mainstream schools, provided that there is sufficient funding to provide the extra assistance that they require.

      However, I do wonder how having special needs students impacts on the rest of the students. It does seem to me that there is the potential there for a lot of the teacher’s time to be spent on just one or two students that require extra help. I didn’t have any diagnosed special needs kids in my classes growing up, so I can only base my opinions on run-of-the-mill disruptive kids, but it was incredibly frustraing as a child wanting to learn to have the teacher constantly dealing with unruly and disruptive kids as opposed to teaching.

      Personally, I am a firm believer in separating students into different classes based on their abilities, particularly for subjects such as English and Maths. Similarly, if special needs kids are on par with other kids, then they definitely should be included in mainstream classes. If not, maybe it’s better for them and the other kids if they’re in a more specialised environment that takes their needs into consideration first and foremost.

    • M. Mouse says:

      01:11pm | 15/11/12

      From my experience I’d say the hardest thing for a child like this in a mainstream school is that they will be forced to conform to other people’s timetables (meltdown potential) do subjects they find stupid and unnecessary (art) but if you want a huge meltdown, drag them away from something they love (physics) to go and doing something they hate (team sports)
      Looking back I realise how disruptive I was at school, but because I came top in all the exams the teachers couldn’t kick me out. Life for the rest of the school probably would have been easier if I’d been schooled away from the mainstream as I taught myself everything I know from books anyway, including at university!

    • LaDiva says:

      03:12pm | 15/11/12

      @M.Mouse

      You sound very much like my partner who has Asperger’s . He truanted most of his way through high school (admittedly he had to work casual jobs to support himself and his invalid mother) and caused all sorts of trouble when he did attend, yet he taught himself from books and topped most of his classes. As an adult he put himself through a law degree and is now a practicing solicitor.

      Not everyone is suited to traditional schooling.

    • Philosopher says:

      04:10pm | 15/11/12

      well, don’t you both belong in the Smug Club? Idiot savants…or just idiots?

    • Eskimo says:

      01:10pm | 15/11/12

      My son’s an Aspie and attends the local primary school. We were lucky that he diagnosed at about age five and we were able to get support for him at school. While he doesn’t interact with his class mates much, he can’t tell me their names most of the time, he is treated well at school and is progressing at an appropriate rate. He recently explained the difference between similes and metaphors to me. I agree children should be main streamed schools where possible.

    • Sandra says:

      01:21pm | 15/11/12

      My daughter in Junior Primary School had a child with severe problems - the child was offered a place at a local school with a special needs unit. They were offered a place in the regular school for the child’s sibling, they were offered taxi transport to and from.  This was refused as they wanted and expected their child to be educated in a normal school with the extras that this special child needed.
      Unfortunately the child was disruptive, sometimes violent an unlikely to reach any sort of education standard.  This child meant EVERY other child in the class was short-changed when it came to attention from a very caring and devoted teacher. Those who were a bit brighter could not always be extended, those finding something difficult missed out on some extra help.
      Not all kids can be educated in a normal school environment nor should they be. Is it fair for a whole class to be impacted because of the needs of one.  Every child attending school has special needs to allow them to thrive.  Sometimes the needs of the many out-weigh the needs of the one.
      To balance the above - a friend had a child with a language difficulty who benefited greatly from 12 months a special program and transitioned to a normal school and is now a qualified teacher.
      The Autism Spectrum covers a very broad range of behaviours which have many different impacts. Early ‘intervention’ programs are a big help. Providing support and training to teachers is also vital but the current mantra of running schools like businesses makes that support and training much harder to achieve.
      Good luck to you and your amazing child I am sure she will realise how precious she is.

    • Sandra says:

      01:21pm | 15/11/12

      My daughter in Junior Primary School had a child with severe problems - the child was offered a place at a local school with a special needs unit. They were offered a place in the regular school for the child’s sibling, they were offered taxi transport to and from.  This was refused as they wanted and expected their child to be educated in a normal school with the extras that this special child needed.
      Unfortunately the child was disruptive, sometimes violent an unlikely to reach any sort of education standard.  This child meant EVERY other child in the class was short-changed when it came to attention from a very caring and devoted teacher. Those who were a bit brighter could not always be extended, those finding something difficult missed out on some extra help.
      Not all kids can be educated in a normal school environment nor should they be. Is it fair for a whole class to be impacted because of the needs of one.  Every child attending school has special needs to allow them to thrive.  Sometimes the needs of the many out-weigh the needs of the one.
      To balance the above - a friend had a child with a language difficulty who benefited greatly from 12 months a special program and transitioned to a normal school and is now a qualified teacher.
      The Autism Spectrum covers a very broad range of behaviours which have many different impacts. Early ‘intervention’ programs are a big help. Providing support and training to teachers is also vital but the current mantra of running schools like businesses makes that support and training much harder to achieve.
      Good luck to you and your amazing child I am sure she will realise how precious she is.

    • Philosopher says:

      01:21pm | 15/11/12

      *sigh* I wish my child had high-functioning autism - it sounds cool. I could retire early on the proceeds of his genius-level career. Thank goodness he doesn’t have low-functioning autism (shiver)

    • TheRealDave says:

      06:22pm | 15/11/12

      Think of the awesome fun you can have cracking super secret spy codes, tracking down killers based on patterns only you can detect, breaking the bank at Vegas and stuff.

      Savants have all the fun :(

    • Cat says:

      03:46pm | 15/11/12

      As someone who has a physical disability rather than a behavioural variation and who has taught in both special schools and mainstream schools may I say that I have observed far too many children with a wide range of disabilities being short-changed in the mainstream. It can look good to parents, teachers, outsiders and even sometimes the students but there is a lot more to “special” education than a bit of extra teacher time or student support assistance.
      Unfortunately parents and society as a whole would far rather have people with disabilities being “like everyone else” than accepting them for what they are.
      You are not necessarily doing your child any favours by insisting on mainstream schooling. Unfortunately mainstream schooling is all that is available for most children who desperately need something much more supportive.

    • PJ says:

      05:21pm | 15/11/12

      The NDIS has blown out from $10.5 Billion per year to $22 Billion per year. Typical Gillard Government balls up.

      The sad thing is it still misses out about 1 million people that should be helped.

      The $22 Billion forms part of those $120 Billion promises which the Government will not tell us from where the money is coming from, given their reckless debt.

      I have a great fear that more members of our community may be sadly let down by not receiving the help they require.

    • Steve says:

      05:25pm | 15/11/12

      Brian, you said funding for ASD is non-existent - have you accessed the federal government autism assistance package?

      My son has high-functioning ASD (just like, I suspect, his dad), and we’ve managed to get him into a mainstream school with a very supportive principal and deputy principal. He’s made it through 3yo and 4yo kindergarten okay, and hopefully he’ll manage just as well when he starts school next year.

      The speech therapy and coccupational therapy funded by the federal government has been phenomenal.

    • Zac says:

      06:02pm | 15/11/12

      Well, anything that exposes how funds are swindled to promote secularist/Atheist causes in schools will never get through.Not surprising taking into the editor itself is Atheist!

    • Utopia Boy says:

      06:10pm | 15/11/12

      One of my son’s has Asperger’s Syndrome. He’s pretty high functioning, but academically behind. We tried him in a “special” school for a while, but his social skills declined and his behaviour became intolerable. He’s been at a normal state school for 10 years now.  We think he’ll never be a traditionally successful student, so we try to give him as many different experiences as possible to find the one thing he might focus on that will allow him to lead a successful life not reliant on government assistance.  Although we do this, we are still pretty sure he will find his own niche, in his own time.
      I consider him an absolute gift of nature, not subject to the same rules of life as the rest of us, but a boy who is happy in himself, happy to ask questions others might find embarrassing (yes there’s been some moments!) and the most loving son a man could ask for.

 

Facebook Recommendations

Read all about it

Punch live

Up to the minute Twitter chatter

Recent posts

The latest and greatest

The Punch is moving house

The Punch is moving house

Good morning Punchers. After four years of excellent fun and great conversation, this is the final post…

Will Pope Francis have the vision to tackle this?

Will Pope Francis have the vision to tackle this?

I have had some close calls, one that involved what looked to me like an AK47 pointed my way, followed…

Advocating risk management is not “victim blaming”

Advocating risk management is not “victim blaming”

In a world in which there are still people who subscribe to the vile notion that certain victims of sexual…

Nosebleed Section

choice ringside rantings

From: Hasbro, go straight to gaol, do not pass go

Tim says:

They should update other things in the game too. Instead of a get out of jail free card, they should have a Dodgy Lawyer card that not only gets you out of jail straight away but also gives you a fat payout in compensation for daring to arrest you in the first place. Instead of getting a hotel when you… [read more]

From: A guide to summer festivals especially if you wouldn’t go

Kel says:

If you want a festival for older people or for families alike, get amongst the respectable punters at Bluesfest. A truly amazing festival experience to be had of ALL AGES. And all the young "festivalgoers" usually write themselves off on the first night, only to never hear from them again the rest of… [read more]

Gentle jabs to the ribs

Superman needs saving

Superman needs saving

Can somebody please save Superman? He seems to be going through a bit of a crisis. Eighteen months ago,… Read more

28 comments

Newsletter

Read all about it

Sign up to the free News.com.au newsletter