“The unexpected things I’m dealing with as my child with autism grows up.”

Little kids with autism spectrum get all the publicity. On the news and online, it’s all toe-walking two year olds and news of early intervention breakthroughs.

Teenagers and young adults rarely get a mention. Not cute enough, I suspect.

My eldest son, Tom, who was diagnosed with autism spectrum aged three, has just turned 18.

We have navigated the teenage years and are now into adulthood, so please, pause here and indulge me while I give myself a pat on the back. Those cute kids make cute teenagers but they don’t become adults without some significant trauma along the way.

Each teenager on the spectrum is as different from another as is each flake of snow. But they’re much bigger, and often louder than the other precious little snowflakes.

With autism, the range of abilities is huge. And most kids I know can be very capable in one area, yet significantly challenged in another.

Take my son for example.  Tom has his L-plates and can drive pretty well. But he can’t add up the column of minutes driven.  Tom can get himself into the city to go to a heavy metal concert, and then get back home safe and sound. He isn’t able, however, to go into a new shop to buy milk.  Tom works at McDonalds part-time and cook fries and take orders very efficiently. Yet he can’t call up the manager to swap a shift around.

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Seana and Tom

Many people with autism can appear to be less able than they really are due to their less developed social skills.  My son is the opposite. He’s pretty friendly and sociable, but intellectually and academically is not as capable as he appears. He needs a lot of support. A big fat lot.

So here is how we've experienced the typical teenage pitfalls.......

Sex and rugs and rock n’ roll

Parents of younger kids on the spectrum might be reassured to hear that many typical teenage issues have passed Tom by. He’s not been interested in drinking and drugs, once famously saying: ‘I’m only into the sex and rock n’ roll, Mum.’

One day a text pinged through: ‘Mum, a boy at school has offered me some drugs for $30. Should I buy them?’

My text in reply: ‘Probably better not, son.’ The next text I sent was to the school principal.

God love him, our boy knows that he can’t navigate the world without relying on his parents’ help and advice. This is in sharp contrast to his younger brother who truly believes that we know nothing and have no words of wisdom to impart. So wrong.

Actually, the not drinking was a rules issue. He preferred not to touch a drop of alcohol before he was 18, ‘because you’re not allowed to, Mum.’ However, he’s taken to it with gusto in the last two weeks and we now need house rules on boozing. Quite confronting for us as parents.

Mental health issues

It’s common for kids on the spectrum to have mental health issues as teenagers. Whilst I was petrified about this, our experience has been… interesting… manageable…. sort of.

Parents definitely need a good psychologist and paediatrician in place early and luckily we had that. When our son had an acute episode of anxiety/paranoia, we got help from the GP and paediatrician very fast (in the form of Valium and a change of meds.)

Anxiety tends to be the major issue for teens but it’s treatable. The same combination of talking therapies and medications work as well for our kids as for others. But we need to get in early.

Teens and technology

This is a raging beast of an issue. Technology can be so very positive, Facebook has been a great friend. But it’s also a real minefield.

We still need to take away Tom’s phone and computer each evening. Otherwise he would just never sleep. Limits need to be set and stuck too. It’s bloody hard going sometimes.

ASD and the HSC

Tom is doing a non-academic, non-ATAR HSC and I wish all my friends’ kids were too. Man, I am bored of hearing parents talk about the rigours of Year 12. It’s not stressful in our house.

Seriously, I can imagine that supporting a son or daughter who is able to do a typical academic HSC must be very stressful for parents. Count me out.

Relationships (back to sex?)

Tom is sweet 18 and never been kissed and these days I worry more about that than anything else.

The prospect of dating and relationships are huge and terrifying for Tom. He’s keen but hasn’t a clue how to get started with the whole romance thing.

There’s a huge information gap in this area. Luckily, Tom is years behind his peers. Luckily there’s a psychologist in Sydney who does workshops in this very topic. He’s booked in.

Tom, drumming.

 

 

Autism and a working life

If you look at research into work outcomes for adults in the spectrum, you just want to weep. Things have got to get better. They are getting better, aren’t they? Help.

The best thing we ever did was help Tom get support to find a part-time job. That’s a start at least.

His career goal is to be a drummer in a heavy metal band. Please do not hesitate to get in touch if you know of a vacancy.

So now my son is an adult and it’s time to prepare for the future. I can feel quite hysterical about school ending, especially when I hear it described by a friend with an older son as ‘like falling off a cliff.’ Because adulthood will bring its new challenges.

Luckily there is hope ahead in the form of a new website, coming at the end of April. It’s called Launchpad and is written for teenagers and young adults on the spectrum and their families. Launchpad is being made by Aspect, with funding from the NSW Dept of Ageing, Disability and Home Care. I’m one of the co-authors, and once it’s done, all I have to do is read the whole lot again and start following the advice.

Wish us luck.

Seana Smith is a writer based in Sydney. She was co-author of the first Australian Autism Handbook. Seana blogs about anything but autism at Sydney Kids Food + Travel.
Here is the link to Launchpad check it out! 

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