“We think that your child is autistic”.
Your hopes and dreams, even subconscious plans for your child’s life, can be destroyed in an instant by that one sentence.
An autism diagnosis is not a bereavement, but it is terrifying, stressful, even depressing.
It is a door slammed shut on the life you imagined for him. A bridge to his future, albeit built subconsciously, washed away.
When I heard the words from the psychologist confirming our fears, my reaction was one of loss. Nobody had died and I don’t want to compare this to losing a child: I hope I never have to experience that. But I was shocked at my own reaction. We had brought our child to this clinician because we suspected that he was autistic. Then she and the speech and occupational therapists at the clinic ran the tests (all interactive stuff rather than medical checks) and told us, yep, we agree: we think that your son is autistic.
Don’t you need to run some more tests? No.
Don’t you need to check with somebody else? No.
No time needed for reflection or further tests. Confirmation on the day. I weirdly wanted them to need more time to check, that it wasn’t certain. But they didn’t need it. This was crystal clear: your son is autistic.
We had brought photos with us showing the types of behaviour which we thought indicated signs of autism. Photos of headstands in his cot, watching tv too close (and upside down), stacking cans from the kitchen cupboards, fixating on toys rather than playing with them normally. To our surprise, these photos of our son showed so many classic symptoms of autism that the doctor asked if she could keep copies of the photos to help train new members of staff at the clinic. So our son was not just autistic, but autistic enough to be a poster boy for autism. Great.
So why the sense of loss?
When a child comes into your life (even during the pregnancy), you of course start planning for that child: buying clothes, prams, all that rubbish.
But in our subconscious minds we are also imagining in minute detail the life that this new person will live. The school he will go to, his adventures and setbacks, what he will ‘be’ when he grows up. His personality, his hair colour, his smile. When we heard the dreadful words that confirmed that our son was autistic, these plans that my intuition had been building vanished. I no longer had a clue what his life would be like, I just had a deep sense that whatever life I had been imagining for him was now gone. I needed to start learning about autism and help him to carve a new path. A new life.
Carving the new path
Fortunately for our son, my wife Gill had worked with children with special needs and with autistic adults, so she knew the symptoms well and had noticed them developing in Nick at around 14 months old. I had no clue. My diagnosis? He’s a bit quiet. Gill is patient but had been resolute on this: something was wrong with our child and we needed to act quickly.
Gill had done some online research about symptoms of ASD to check her suspicions, then had made the bold step to ask our GP for a referral to a child psychologist. This had got the ball rolling on getting our diagnosis and perhaps professional help.
Now: diagnosis confirmed, how to fix the problem? Ok I know you can’t fix autism but you can take action to help your child with her symptoms and challenges. Our biggest concern was the lack of speech, so we applied for speech therapy through our local health trust. We were offered what amounted to 30 minutes of speech therapy every 5 weeks, which didn’t feel like a lot. In fact, the more research we did the more it seemed totally inadequate if our child was ever going to learn to communicate. So we accepted that help from the state but we realised we would need to do more if our son was to have a shot at anything like a normal life.
Realising the lack of public service provision for preschoolers with ASD in the UK, Gill also found a local company who provided therapy for the symptoms of autism, based on the principles of ABA (Applied Behaviour Analysis). [(Save this for a separate post and invite comments) ABA is a form of autism therapy which uses prompts and rewards to shape a student’s actions toward goals like learning vocabulary, completing a puzzle or toilet training. It is still seen as quite controversial in some quarters, mainly because of its association with some draconian practices in the 1960s and 1970s. (For more on the fairly-horrifying history of autism treatment, read the excellent book Neurotribes by Steve Silberman) To be fair, as with most things in life there is good practice and there is bad practice]. By the time we got the official diagnosis, we had already pushed ahead and hired therapists to help Nick with a programme of intensive one-to-one therapy (for intensive, read: over 20 hours per week). Not everyone wants to move this quickly, quite understandably. The normal reaction is to get the official diagnosis from your local child psychologist and then see what help is available. But we had heard so many scare stories of families waiting anything from 6 months to 2 years to get a diagnosis that we thought it better to get started and then switch focus from private provision to public services. So we ponied up and launched ourselves into this new and exciting / terrifying world of autism therapy.
Let’s be honest: not everybody can afford to afford to pay for therapy privately.
As it turned out, neither could we.
Unfortunately / fortunately we did it anyway.
We started it a little bit impulsively and hadn’t really considered the costs beyond we’ll-figure-it-out, which is not exactly prudent financial planning. It alleviated the immediate panic about how to help our child, but I admit that it created considerable financial pressure for the longer term. 8 years have now passed since we first hired therapists to help our son and we are still carrying the debt that we accumulated paying privately for the programme. So as amazing as the therapy was in terms of helping transform our non-verbal son into a chatty and open little boy, the pressure to help-the-child has been replaced with a different pressure. A financial one. And that is one of the problems of autism which is never discussed: the fiscal side effects of the treatment are almost as big a problem as the condition.
Ok: what next?
If and when you get the diagnosis that your child is autistic, try the following simple steps:
- Step 1: Feel bad. Let’s face it, you just got some pretty awful news. Even if you were expecting it, it can be absolutely shocking. I tried to skip this step, but it’s impossible and actually counter-productive. I couldn’t get past trying to rationalise the whole situation: ‘why-has-this-happened-and-what-does-this-mean’? So I was a bit overwhelmed and mentally paralysed. Take some time to process the news and come to terms with it. But not too long: wait-and-see is not an option for you, as you will see in step 2:
- Step 2: Take action. Channel the emotion of the announcement into finding out about what help is available to help deal with your child’s symptoms. Just as every human is unique, every autistic child has a different combination of symptoms and so requires tailored therapy. Investigate what is available free of charge from your local health and education trusts. You will probably want to investigate what is available privately too, as the unfortunate truth is that public finances are stretched thinner than ever. You may be underwhelmed at the public provision of services for treating the symptoms of autism. We had already started to pay for private sector assistance as we feared that the diagnosis process itself could take many months. We were unusually fortunate in that Nick’s diagnosis was confirmed almost immediately; a large number of families wait more than a year for official diagnosis. But as pleased as we were with a rapid diagnosis, the public sector provision of services left us frustrated. Nick was taking part in 25-30 hours per week of private therapy and working on a one-to-one basis with a rota of 4 therapists and a programme supervisor. This allowed him to make rapid, expensive progress. As for state provision, we were offered 30 minutes of speech therapy once every five weeks! Contrasted to 100-120 hours per month of private therapy! We realised at once we would have to pay for his therapy ourselves if we wanted to help him make meaningful progress as fast as possible.
An autism diagnosis is not the end of your life but it is the end of life as you know it. Take time to process it and then become an ASD Machine. Find out what help is available from all sources to help your child deal with her symptoms and get equipped for a fulfilling life.
Whether you decide to stick with public sector provision or to go private, do
The book: US
The book: UK
UK info on practical help available (pretty basic, but a starting point).
A fairly detailed list of support services available in the UK (none of them are validated by NAS, but useful start point for finding out the sort of support available.)
USA: Autism Society. An excellent resource for all US-centric ASD enquiries.
Australia: ASPECT website. A comprehensive and upbeat resource (‘a different brilliant’) with lots of excellent advice and links:
New Zealand: AutismNZ website. A simple but helpful website with many helpful links.
South Africa: Autism South Africa (A;SA). A good starting point with a lot of information about autism symptoms and diagnosis. Some limited links to local support organisations.
*note that AutismSA is a website about autism services in South Australia not South Africa.*