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Autism

There is always hope

When JC was diagnosed with autism we had no idea what the future may hold but more importantly we had no real structured plan going forward.  We had no idea of what to expect as he would travel through puberty.  I have no idea if this is because he was diagnosed at a hospital more than an hour away from our house and as such they weren’t aware of services in our area,  or because he wasn’t diagnosed until later meaning they didn’t really have a plan because he had missed all of the early intervention or if it was because he was high functioning and it was perceived it wouldn’t be needed or that resources are so stretched that for the high functioning ones there just isn’t the help.

Either way,  that lack of planning has impacted on our family greatly, but especially on JC.

Whether or not a child with autism is high functioning it still means that they face major social and communication difficulties.  Humans are social creatures and have a vast array of social rules,  norms and cues that are difficult to navigate even for a neuro typical teenager in the throes of puberty,  let alone someone on the spectrum.

JC was diagnosed with autism in the high functioning range just before puberty set in. Within 6 months of that diagnosis he had isolated himself to the point he refused to leave the house, and, 3 years later, continues to do so.  He will go to school unless,  for some reason which can take quite a while to determine,  he refuses to do even that. For the most part he lives his life in his lounge.

We have tried many things to get him to engage in life – with us and the outside world. All to no avail.  A couple of years ago we spoke to a psychologist about it.  All our attempts to stretch him had failed.  We wanted to use the only thing we knew would motivate him,  his love of reading fan fiction.  We wanted to remove it and let him earn it back through social engagement just with us at first but then with the outside world. That psychologist explained to us that his special interest is his safety net and that removing it would create such anxiety for JC it would be torture.  We were so shocked and relieved we took professional advice.  We definitely did not want to torture our son!

So we returned home and did the best we could.  We begged, cajoled,  even bribed in an attempt to get him out of that lounge and back into the land of the living. I read lots of books that said children on the spectrum needed to be stretched,  given opportunities to achieve and succeed at things which then would build their self esteem – and sport especially was good at this.  We tried so many things. I would get frantic as our son refused to leave the room in which he was ensconced thereby refusing any attempt to do such stretching and achieving. How coukd I get him to play sport if he woukdnt leave the room?

(It turns out that the advice given to us was in fact incorrect but another post on that will follow)

Yesterday was a horrible day.  It rained and hailed with gale force winds all day.  Going outside was impossible.  It’s school holidays.  As the day progressed with me pottering and JC in his boxer shorts,  under his blanket,  reading his fan fiction,  I got more and more depressed.  I felt like we were living two seperate lives.  I ached for a”normal” relationship with my teenage son. But instead I took him his food and drink throughout the day,  he would say thank you and we would go back to our seperate lives under the same roof.

I thought about those parents who had the benefit of early intervention and, to be honest with you, I resented them. I was angry at the doctors who refused to acknowledge something was wrong when I took him to then at age 2, 3, 4 and 5, I was especially angry at the ADHD specialist who took our $2000 to assess our son because the said previous doctors refused tohelp us, and cameback witha diagnosisof ADHD/ODD only to be told 6 years layerit was autism.  I resented and became angry at all that time we had missed whet he would have benefited from therapies such as ABA and social stories,  where we could have been building his confidence instead of crushing it with behaviour modification that advised for kids with ADHD. Studies show that the earlier the diagnosis,  the earlier therapy begins,  the far better the outcome,  the better chance of an independent life.

I was once told that research has shown that wherever you are at at the age of 25 is pretty much where you will be for life.  He said that this means of you are independent, working and socially integrated at 25, this is how you will be for the rest of your life barring a major catastrophe.  If you are living at home and not socially integrated by then, the chances are you won’t ever be.  Now,  I haven’t read the study so I have no idea how the study was conducted,  what the hypothesis was and how it had been extrapolated to the wider community. Either way it has scared the crap out of me.  JC is 15. We have 10 years to improve his chances of living an independent life.

Motivated by thinking of this study,  I sat next to JC in his lounge.  He was playing PS3.

“Can I play with you?” I ask.
“Mum, youre a pacifist.”
It’s true.  I abhor killing and war and am very vocal about it. War is unneccsary, especially the wars being fought today.  I admire Gandhi and Buddha.  My kids know this very well.  I looked at the game my 15 year old was playing.  Dead bodies were lying every where.
“JC do you have to play these games? ”
“It’s just a game mum.  They’re not real bodies.  It’s pretend. ”
I sigh. At least he is aware of that. He once tried to reassure me he wasnt about to go around killing anyone. Such a relief.
“Well, can I play with you?”
“No.”
“Why not.”
“I prefer to play alone.”
The 2 second conversation took place with me sitting next to him and him continuing to play.

I once read that to engage with someone with autism you need to take an interest in what they like,  in their special interest.  I have tried,  on Lord have I tried.  Nothing has worked.  Yet again, I walked out of the lounge defeated.

By the time Dee got home from work he could see I was down.  He asked why and I told him.  We wondered,  as we had many times in the last three years since his diagnosis, how on earth we could stretch JC past his comfort zone.  We had no idea. 

Then we got a text from a friend inviting us all to the footy final on Saturday. They are one of a handful of friends who totally get our family and accept us as is.  Dee’s team is in the final,  JC’s team isn’t. We went into his lounge and asked if he would like to go.

“Sure,” he said.
We looked at each other. We couldn’t believe it.
“Swans arent in the final,” Dee said. He wanted to make sure JC understood he wouldn’t be watching his team but Dee’s.
“I know, but it will be fun watch Fremantle whip the Hawks’ butt!”
Dee and I laughed. Dee made some joking quip about Fremantle being a rubbish team to which JC replied that Dee’s team is still going to get whipped.  We left the room.

We got to our lounge and sat down. Tears started streaming down my face. Dee put his arm around me.
” There’s always hope my love. Always hope.”

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The Voice for our children with Autism

When we become pregnant we wish for many things for our children, but most of all, we wish for “ten fingers and toes”.  We wish for healthy kids because once you have health, you can achieve anything, right?

Then, your child is born and as they develop, you know that something is not right.  Something is either missing, or off.  The endless outbursts, the non communication, the lack of social interaction.  Deep down this isn’t “normal”.

In our case, we went to the doctors for a full six years complaining of JC’s behaviour before he was diagnosed firstly with ADHD/ODD (which is Oppositional Defiancy Disorder).  His behaviour was, frankly, a nightmare to cope with.  He would have meltdowns on an epic proportion – toys flying across the room, kicking, biting, screaming, and they could last for hours.  We quickly learned that he was routine driven and if any part of the routine was broken a melt down would ensue.  As a family, we adapted quickly.  And with it came judgement.

“You are indulging him,” ‘helpful’ family members would say.

“If that was my child…” I heard many times in supermarkets, walking with the dogs, from family members.

As a society, we have expectations of how a child should behave.  If they don’t behave that way, we blame the parents.  After all, children model behaviour and it has to be the parents’ fault.  Families of children with what I call a non-visible disability, I have discovered, get most judgement from extended family the most.  We are treated almost as if the poor behaviour of our children reflects badly on them.  Needless to say, we adapted – family isolation set in.

Then, when JC was 11 we decided to take him for a reassessment as he was entering high school.  We had navigated primary school with some success, with me being the one parent the teachers never wanted to see.  I had already become masterful at pushing, pushing, pushing, making sure that JC’s needs were being met.  We wanted to make sure that as he entered high school, his ADHD hadn’t thrown up any learning difficulties we didn’t know about.  

We attended the Royal Children’s Hospital in Melbourne, where we now live.  It was a full day of assessment both for JC and for us, his parents.  Endless forms and questionnaires and interviews for us, and endless activities for him.

At the end of the day we were taken into a room whilst JC was given some video game time.

“Have you ever been told that JC has autism?” we were asked.

Dee and I looked at each other.  The word had never come up.

“It’s on the high functioning range,” the psychologist said, “but he is definitely on the spectrum.”

This came as a complete shock.  ADHD/ODD is what we thought he had, and we felt we could cope with that – the right diet, some behaviour modification – we could give him the chance at achieving anything, right?

But autism?  What does that mean?  Is it curable, can he grow out of it, is it lifelong?  JC began to show signs of extreme social and communication deficit from a young age.  His language was always monosyllabic.  He could speak, quite well, but he couldn’t engage in a conversation.  At the age of 11, we had never had what I would call a proper conversation.  Now we knew why.

“He is classic autism really,” the lady said.  “The aversion of the eyes, the walking on the toes – these are the physical tell tales.  Then there is his pedantic speech, his monosyllabic answers when asked a question, his clearly routine driven way of life. And other signs as well.”

“We will prepare our report,” she said.  “When you come back in a month, we will have a full plan for JC.”

We returned a month later.  We were handed the report.  It read the following:

JC is diagnosed as having dysthymia, anxiety disorder, ADD inattentive type and high functioning autism.

The words leapt off the page at us. 

“What is dysthymia?” I asked.

“It is chronic depression,” the head of the unit said.

A tear trickled down my cheek.  All the 11 years of my sons life I had been working at “modifying his behaviour” had in fact been causing him such anxiety that he now had two recognised disorders of anxiety and depression.  I wanted to be sick.

Now, of course, all the sensitivities to sounds and clothes, the smelling of the food before eating anything, the strict routines, the repetitive speech, the massive melt downs, all of that and more, now made complete sense.

“How do we help him?” I whispered.

They gave us a list of some organisations and sent us off on our way to process the information.

On the way home, I kept looking at JC.  How are we going to let him know.  Beneath the emotional outbursts he was (and still is) such a beautiful boy.

The first thing we did was sit him down and tried to explain in the best way we could that he didn’t in fact have ADHD, he had a condition known as autism.  We explained that this affects certain parts of the brain, which makes a person unable to control all the sensory input around him, which is why he needs to control so much of his environment.  

“In effect, my love,” I said, “you kind of get brain overload.”

As we spoke to him I sensed relief, both for him and for us.  We weren’t bad parents and he just wasn’t being naughty (although we tried hard not to make him feel like that).

Now we had the diagnosis, we felt we could move forward, get JC the assistance he needed and we could finally get on the road to that achievement of anything he wants.

If only life were that easy.  

JC missed out on early intervention and because he was now 12, he was acutely aware of being different.  He refused speech, occupational or any other kind of therapy.  Getting him into the car to attend any appointments, became a mine field.  His outbursts increased, not decreased as he reached puberty, except now he had learned to swear and insult to boot.  His dependence on computer and other technology led him to isolate himself to the exclusion of all else.  As I write this, he is now 15 and has not had one single friend over to the house, nor had a birthday party, in three years.

And the judgement has continued, as well as the family isolation.

Yet, through all of this, we are a stronger family.  I have become a far more compassionate person, so much more tolerant of others that I come across, so totally in awe of people with disabilities who have to navigate a world where the general population want us all to look and act like the media says we should.

I have watched as my son has been persecuted for acting or saying the wrong things, like the time when, at the age of 13, during puberty, a girl asked him out and then asked him if he loved her enough to have sex with her, and then didn’t understand why he got into trouble for constantly asking her when they were going to have sex. (I will be doing another post on sexuality in children with Autism).

You see, children with autism are very literal.  You have to be careful what you say.  They take all things you say at face value.  They don’t understand the hidden meaning behind sarcasm or innuendo.  I believe their biggest gift is that they don’t play mind games – they simply can’t.  They tell you like it is and they believe that what you say is what you mean.  At times, it is shocking.  Like the time he told me that if I sat on him I would crush him (because I am overweight).  But I had long since learned to appreciate his honesty.  Of course, these skills can be learned and attempts must be made to teach them, so we went through a session of why it isn’t okay to tell someone who is overweight that they would crush you if they sat on you 🙂 

Because they do take things very literally, they also believe most of what you tell them.  They have no reason to doubt you.  This makes them very vulnerable.  After the above incident, JC went through terrible bullying.  He was called a pedophile by the kids at school.  Even though we have told JC that he isn’t any such thing, still today, some two years later, when he is upset and frustrated with being autistic, he will call himself a “pedo” among other things that kids have called him.  He simply believes it to be true.  We hope as he matures and is surrounded by more and more support and love, that this will change.

Navigating a world like the one we live in is a mine field.  JC struggles every day.  In our particular circumstance, members of our extended family still, 3 years later, refuse to believe that he has autism, coming right out and saying that they don’t believe he has it, that we use it as an excuse for his behaviour.

Demonising is common place.  The media will use headlines such as “Autistic rapes teenage girl”, or “Autistic person holds up bank”, or other such headlines.  The point is that the word autism is linked to the crime, yet research shows that it is extremely rare for people on the spectrum to commit a crime and also that, rather than autism itself being the cause of the crime, there are many other circumstances that lead to said crime.  This perception extrapolates to the wider community and we have had first hand experience where JC has been accused of something that we simply know is not capable of doing.  

At times, it can be relentless.  But, three years on, it is our firm belief that it is our duty, as the parents of these children whose major deficit is in the realm of communication, to advocate for these kids.  We live with them, we know them better than anyone else.  We need to keep pushing, keep educating, keep working towards a more inclusive, tolerant society that is more accepting of these kids, that is prepared to help them navigate this over stimulated world.

Recent statistics in Australia say that 1 in 160 children are diagnosed with Autism, in the USA a figure of 1 in 80 has been bandied about.  That is a lot of children in the community who are being misunderstood.  We have to change this.  We simply have to and I, for one, will not rest trying to get the message of what an amazing group of kids these are – each with their own beautiful personalities, unique set of gifts and each able, in some way, to contribute to this world to make it a far better place to live in.

Who is with me?