Life After Therapy: What the Future Holds

light-at-the-end-of-the-tunnel
When you are in constant therapy it can be good to see the light at the end of the tunnel

Intro

I’ve been very lucky to get Michael diagnosed and into therapy so young. But there is one bad aspect to it – I have nothing to measure him up against. I still have no idea what to expect of his future. So little is known about autism – it is just a collection of symptoms, of diagnoses.

I expect Michael will improve, while retaining many signs of autism for the rest of his life. I don’t care if he is indistinguishable from his peers. All I want is for him to be able to learn, to have meaningful relationships and lead a happy life. I know this is possible. Most people with autism, if they receive early intervention, do get there. Yet everyone I know is in therapy and I just don’t know what kids that do well look like. Only the sad stories seem to be shared on social media.

Recently I’ve been lucky enough to have a visitor on my blog ‘from the other side’ of therapy. She has such wonderful stories that I have asked her permission to share them here.

Elly’s Story

Our son J was diagnosed just before 3 years, though I had him in speech therapy from 20 months. He was initially diagnosed as language delayed, then PDD-NOS, then classical autism and now upgraded to ASD with the new diagnostic criteria.

Our ABA programme started when he was 3 and has been ongoing ever since (he is now 10). I just wanted to tell you in case you have any doubt that you are 100% on the right track. One thing that really frightened me in those early days was not knowing what my son’s future would be.

Where were all the reference points for Autistic people? Where WERE they all? (my side note: pretty sure they’re all so busy leading happy and fulfilled lives that they have no time for us poor slobs still schlepping away every week). All we have culturally is Rainman and Sheldon, and some lady I’d vaguely heard of who speaks to cows (my side note: Temple Grandin is awesome). Were they all in institutions? Was that where my baby was headed? The shadows and turns in the road scared me the most.

Do not despair.

Elly’s Advice to Parents at the Start of Therapy 

There are two big things I would say to you: Firstly, where you are at now is not where you will be. This is really hard to remember, it is easy to tranpose the current day skill level into the future and fall into a pit of despair over how unable they will be to function as a school aged child with whatever the skill deficit is. There was a time when my son had no language. He would not look at me or answer to his name. He stimmed non-stop. I remember despairing that he would ever be able to tell me about his day, all he could do once he had words is echo. I remember wondering if he would ever play, rather than sit and spin wheels or line things up.

What Life After Therapy Looks Like

Fast forward to today, after thousands of hours of ABA.

J is in mainstream school in a mainstream class with only 3 hours of SSO support. He just successfully completed his NAPLAN test and passed (and got the highest band for Spelling, go J!).

He got an award at assembly for helping a student who had been bullied this week. J took her outside, told her that she should “ignore bullies and try to let nasty words wash right past her, like a river flowing by”. He shared a book she might enjoy with her and they took turns reading pages. When she was feeling better, he took her to class.

He told me all of this at the dinner table, then we had a great talk about black holes (his latest obsession is astrophysics). My son did his homework, came for a cuddle and read his novel next to me, had a shower and dressed independently and put himself to bed. The only stim I have seen in a long time is jumping when very excited. He is a truly lovely child, well-liked and with great potential to be whatever he wants to be.

Hard Work Pays Off

That brings me to my second piece of advice: WORK HARD. Work harder than you think you need to.

I worked to pay for therapy back before the ABA days – 4 days a week at my local courthouse from home.

We had five therapists doing 25 hours and I would do 10 hours of material making each week.

After a couple of years I quit my job so I could take over the therapy altogether, to generalise it and spread it out more around his schooling.

Now it is largely based on academics and we address any other issues that arise as they come along.

He will always have Autism and I see it as a unique, special part of him (rather than some cancer I want to completely destroy, like in the early days). He sees the world in such an incredible way and has a focus on his passions that other people don’t seem to have. I see my job now as directing those talents and helping him to make the most of his strengths and weaknesses, much like any other parent with any other child.

How Many Hours?

All I can recommend is what has been studied, which is the minimum of 25 hours a week. This is unquestionably VERY hard to achieve, but the goal with ABA is to make every waking moment a time for intervention. That is exhausting and expensive, so at the end of the day you really have to do whatever you can.

We did our 25 hours around full-time kindy. This was so tiring for our son the programme had to be really tailored to accommodate fatigue. When he was 5 he went to school and the hours dropped to 10. I personally wish I had delayed his school entry until he was 6 so he could have had more intensive ABA for that additional year. You know what they say about hindsight being 20/20.

Most of my regrets are that I did not do more. He is great, but I wish we had worked harder and made even more progress in that early intervention period.

We went with a company called I.S.A.D.D, which was one of few home-based ABA groups in the pre-NDIA days (my side note: there are now many such programs. Michael is at the Lizard Centre). They cost roughly double what they cost a few years ago but at least NDIA covers some of it these days.

Discrete Trial Training

One thing I cannot over-emphasise is how important the repetition and discrete trial training is in learning language. ABA is evolving as far as play and social skills go (in my experience, ABA is less helpful here). But ABA – and the billion repetitions involved – is the ONLY way I have seen to teach the ASD mind language. Do not worry too much about the echoing. All the professionals told me this would fade and ABA eventually addresses it, and they were right. I can’t even remember when it stopped, it was once language mastery was achieved to some degree (I think around 4-5).

Reading Skills

The other big thing for us has been teaching our son to read.

We did all his sounds – small then capitals – then the letter names (all presented in a discrete trial training format, learned through matching, then receptively and finally expressively). Our therapy group uses a very cheap and easy book by Distar called How to Teach Your Child to Read in 100 Easy Lessons. I used it for all my children and they are all extremely capable readers.

J went from being the absolute bottom of his class in reading to being somewhere in the top quarter. Academic achievement does not worry me, but ‘keeping up’ reduces the cognitive load involved in managing all the social interactions and processing challenges. It is worth addressing fairly aggressively.

The reason learning to read is important for ASD kids is that they are SO strongly visual and school is such an aural environment. With a large number of distractions thrown in along the way. Once your child can read, things like social and behavioural prompts become a matter of scrawling something on a strip of paper for him to refer to. You will find that schools will use written instructions fairly often. Your child can refer back to them as many times as is needed to stay on track with a task.

Work To Their Strengths

The other big thing to remember is to strengthen their strengths! They actually do have lots of them. This will be how they manage to find their niche in the world someday. Give them the time to progress in this field and the pleasure of being good at something when they struggle so much. For my son, this is visuo-spatial skills, so we did lots of puzzles, Lego, drawing, anything that sorts space.

Severity does not matter

Don’t give up! I have seen a SEVERELY autistic boy who responded amazingly to ABA – 60 hours a week for him at first, his mum also became an ABA therapist (my side note: are there even 60 hours in a week?!!). He is my niece’s best friend and I have known him since he was 4. Now he is 17, dux of his class and going into law, into music production. You would never even know he has Autism, let alone had it severely, there are literally no visible signs of it, even to the trained eye. Not every kids responds like that but for him is has been transformative.

Thank you so much for your story and your advice Elly. I know we often get caught up in our little therapy bubble. It’s hard to keep working at it when we have no idea what we’re working for. The outcomes are still unknown for any individual child but it’s nice to see the faint outlines of the finish line! Your son is absolutely amazing, I would be very proud if my son grows up to be like that.

Do any of you have any stories to share?

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