Autism & Asperger's syndrome | Personal story - Dealing with resentment and Asperger's syndrome
Personal story about learning empathy with Autism, an Autism Spectrum Disorder
 
 

TEENAGE ALERT: PLANNING FOR THE NEXT PHASE

by Seana Smith

 

Our lovely boy Tom is 11 years old now, eight years have passed since we realised that he has ASD. Our family life no longer revolves exclusively around Tom, what a relief! His ASD used to fill up all the spaces, but these days ASD is just one part of Tom and one part of our family life.

 

There are four children in the family now and each needs a turn on centre stage, whether that means a toddler who is starving or needs a nappy changed, or second son Nathan needing some special snuggle time with Dad.

 

Our ‘new normal’ as a family of six, is often pretty damn normal. We certainly look normal from afar and sometimes I get a real shock when things happen that make me see how clearly ASD still does impact our lives.

 

Sometimes we ‘forget’ that Tom has ASD and we expect him to behave just like a typical child. We get annoyed with him if he is clumsy and drops things, or doesn’t understand what we are saying to him or if kids come round and he gets overloaded and withdraws from them.

 

We had a huge fright recently when he became horribly obsessive and then threw a series of massive, explosive tantrums, and we had to rapidly make some changes to bedtimes and sensory stimulation levels. We also dusted off our trusty copy of Boardmaker and made some visual schedules again. It was weird to have a child who could be so very autistic one week and then go off and have a terrific and problem-free time at school camp the next week. No wonder we’re still confused.

 

But that’s high functioning ASD, Tom looks so normal and is so normal some of the time, why can’t he just be OK all the time? Does he really have to converse around the topic of milkshakes quite so much… and what’s the thing about having a pork pad thai EVERY Sunday night? I still do sometimes wonder whether he couldn’t just pull himself together and snap out of it. Oh dear.

 

Having the twins in 2006 threw a real spanner in the works in terms of having time to work with Tom. Over the past two years, we have done very little that is therapeutic and are lucky that he has still progressed, probably thanks to his very positive school environment.

 

But the time is coming to focus on Tom a lot more. There are two more years before high school. Finding the best school will require much effort and mental fortitude. Preparing him and making the transition process will need a lot of time and effort. Planning for puberty and adolescence must also be done and we are sure to need a lot of help with that.

 

Tom also has lots of learning difficulties, and he does have some 1:1 and small group lessons at school. It was a relief when we let go of the idea that he could keep up with the rest of the class in all subjects. He can’t, and we knew that even if we worked him to death academically, he would always have issues, the ones typical of his type of ASD, plus learning difficulties with maths. Nowadays we always chose family time, time to play sport and time to relax over working him to the bone.

 

The spectre of the teenage and young adult years can bring us out in a cold sweat. Probably the best thing we can do as parents is to be in the best mental state as possible ourselves and to make sure that we work as a team. That’s a pretty big ask! The good thing is that with our eldest child being the one on the spectrum, we will, as ever, learn the hard way with him and be able to put those experiences into practise with the other three. Well, here’s hoping…

 

In the longer term, we don’t know what the future holds for Tom, nor for the rest of the family. This of course, is true for everyone. It does concern us that Tom functions well enough to live in mainstream society but he lacks so many skills that one needs to survive in it: ‘street smarts’, negotiation skills, knowing when someone is ripping you off.

 

However, we chose, most days, not to have fears for the future nor regrets over the past. We have learned that all we really have is the present, and it’s best to make that positive and fun for us all. Let the future take care of itself.

 

The children who do very well in ABA programs are sometimes referred to as the ‘best outcome’ kids. At the end of his program Tom still tested as having a massive speech delay and an IQ test showed a score of about 70 (borderline for intellectual disability.) So that is definitely not ‘best outcome.’ But I think that our family had a terrific outcome from early intervention and from intensive support at school in the first few years. It cost us a fortune, but it has been well worth it for us and in ways that cannot be gauged by language and IQ scores.

 

So here are a few of my personal assessment scores on where we are today:

 

The Kids Club Score: When we send Tom to holiday programs or to kids’ clubs, he needs no support. I sometimes tell the carers that he has a language delay and suggest they speak slowly and clearly if he seems not to understand something. But all those hours, weeks and years of teaching imitation skills have certainly paid off. If Tom is unsure of what to do, he just copies the other kids.

 

The Cricket Club Test: In his third year of cricket, Tom is doing really well. If we told the other parents he has ASD, I’m sure they’d think that he was fine, but that we had Munchausen’s Syndrome by Proxy. However, any canny ASD parent would see that, when not on the field, Tom doesn’t chatter away and socialise like the other boys do, and a knowledgeable observer might spot the odd stim.

 

The Go Anywhere, Do Anything Criteria: There’s really nowhere we would avoid going and nothing we would avoid doing because of Tom.
I can’t say the same for the twins!

 

There are still a few assessment criteria we need to work on though:

 

The Playing with Toddler Siblings Test: It is so easy to see the core deficits of ASD in Tom’s interaction with his twin toddler siblings. Tom just doesn’t have the intuitive ability to adjust to their level and to their rapidly changing moods. He can be far too rough with them, even though he really loves them.

 

The ‘What’s He Up To Now’ Test? Tom is not great at keeping himself gainfully employed and we like to know exactly where he is and what he’s up to. Otherwise we can get surprises like ‘Do you know your son is on top of the roof’ or ‘Mum, I was just seeing what happened if I poured the honey into my hand.’ Our radars are always switched on as they have to be with much younger children.

 

Putting People Before Electronics Assessment: If he had his way, Tom would spend all his time playing PS2 or computer games and would he would lose all his social skills. We are very strict about how much screentime he is allowed and have to deal with this very behaviourally.

 

The Table Manners Test: We need to work hard on this one as Tom is a messy eater, uses his hands, jumps up from the table etc. We do know EXACTLY what to do: comedy video models of good and bad table manners, clear descriptions of how to eat well, video self-models of Tom eating properly, then tick charts for good table manners with the reinforcer being a meal out with Mum. We know that will work; we just need to get a grip and do it.

 

The Taking Mum a Cup of Tea in Bed Test: This is the big one, and we have a long way to go!

 

Personally, I have a few plans in place for keeping healthy and happy. Sleep comes first, it’s not unusual for me to go straight to bed after putting the four kids to bed. Even if I don’t go straight to sleep, just lying in bed reading or watching TV feels like luxury.


Over the years I have realised that I need to self-soothe, so I have a little list of things to do when I start to get harassed, starting with a cup of tea and going all the way up to getting away for the night with a friend. I also attend a weekly self-development group meeting which I find invaluable. It isn’t religious, but it is spiritual. And I do pray, not sure who I am praying to, but it is always a great comfort to me in times of distress.

 

I think it’s important to have lots of little things in life that you find enjoyable, things that are meaningful just to you. I really do try to stop and smell the roses, not to rush around and to keep calm. I love the book Buddhism For Mothers by Sarah Napthali and keep it in my bedside drawer to regularly dip into. Having been seriously depressed in the past and seriously hysterical too, I know I need to look after my mental health, for my own sake and for the sake of the kids.

 

We know that our family has been let off very lightly by ASD and we are tremendously grateful. ASD is a very serious thing to have, but at least we have the milder version to deal with. I believe that Tom can always keep improving, and that Paul and I can keep on growing as people and parents too. It’s been a relief to let go of the idea of total recovery. We don’t expect perfection in our lives, not in ourselves not in the kids…and come to think of it, not in this book either.

 

 

This story is reproduced with kind permission from a chapter of The Australian Autism Handbook published by Jane Curry Publishing and distributed by Pan Macmillan.

 

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This information is reproduced with kind permission from a chapter of The Australian Autism Handbook published by Jane Curry Publishing and distributed by Pan Macmillan.