:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. Many of my post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
In her New York Times article, Cammie McGovern very eloquently and movingly describes her struggles with the process of securing provision and, ultimately, employment for her autistic son.
I have not become inured to setting out in plain words, the ways in which my child is not like other children.
When Spike was younger, detailing our concerns was quite a simple exercise, "He is not pointing. His words are not coming quick enough. He seems obsessed with fans." His eccentricities formed a collection of off-beat quirks, which belied the inherent seriousness of their presence or absence. As he got older, those differences fleshed out and took on weight. It takes longer to paint a picture in words of our autistic child, who perceives his peers as primarily a source of unwanted sensory disturbance, or who finds that his teacher's words turn from concrete, meaningful symbols to water as her language moves into a more sophisticated register. Detailing the many points of divergence between Spike's development and what is typically expected is an exercise running to many pages. We read them back to our selves, checking for balance and veracity. By our hand, these accounts are merely quick sketches of Spike, but we try very hard to be faithful to our boy, so that he is there, among the words. A bright, cheerful boy with passions and interests, a creative streak. A boy that requires a gentle, consistent, step-wise approach to teaching and to tolerating the perceived assaults of the modern world. A boy who needs a little more time and space, to process your words and expectations, and to recover when he is feels tossed in an audio-visual sea.
When we met with Spike's paediatrician for the first time, the words poured out of us like milk. We were grateful for a chance at certainty after months of carrying around this leaden question. "Is he autistic?". Diagnosis represented a rubber stamp on our passport, permitting us to go forward and get on with it. To move forward linearly, and not in circles. I do not know how many times since we have had to enumerate and qualify Spike's abilities and disabilities. Quite often, our words are taken up by a psychologist or paediatrician and translated into specific medical jargon. Uncertainty is stripped away. "Challenges" and "difficulties" become "deficits". The shape of your child's condition is sharply defined and, in vulnerable moments, it collides with how you thought things might be.
In the disability community and beyond, the idea that we should be focussing on strengths and not deficits is gaining sway. Research shows that, at least in certain contexts, deficit-based systems are ineffective compared to their strength-based counterparts. The use of a collaborative approach which focuses on the assets of an individual should increase resilience and independence. It also feels more humane and guards against conceptualising an individual in terms of their challenges. It's something woven deeply into the way we support Spike, so I am pleased that Britain's local authorities and support services are making steps towards a more progressive attitude. However, I am also concerned that there is a lack of resources to enable full engagement with and understanding of this quite different way of supporting our vulnerable citizens, and that people may suffer as a result.
The forms we complete to access local authority funding for Spike's therapy are a rather watered down version of a strength-based system. There is no real drilling down into how Spike's strengths can be sustained, developed or utilised to support him in areas that he finds more challenging. No one has the time or money for that. So, instead you are left with a rather hollow list which seems to serve the purpose of a patronising, patrician reminder that "it's not all doom and gloom". We don't need reminding of that. Spike is awesome! We are not wringing our hands at our fate. The strength-based system should also not mean that challenges are ignored, or struggles spun into strengths as an excuse to cut much-needed funding to families.
These review processes invariably conclude by looking to the future. What do we want for Spike? What do we see him doing? These questions feel impossible to answer. Ben and I have struggled with our inability to look very far ahead. Of course, no parent can be certain of what the future holds for their children. No matter what opportunities a child has, life is unpredictable and parents can only do the best they can with what they have. But when I consider Oscar, the future seems a bright place. A jumping off point to multiple paths. The possible futures diverge wildly from one another, but I see them. An autism diagnosis brings down a heavy cloud over those paths. They may exist, but sometimes seeing your own hand in front of you is the greater challenge.
Statistically speaking, most parents can expect that their child won't be President of the United States. They can also expect that their children will find employment and live independently, that they will have romantic relationships and be able to pursue their enthusiasms. Can we be certain of those things? Ok, we probably don't have a future President on our hands. Joking aside, in the UK, only 16% of autistic adults are in full-time employment. Only about 17% of young adults on the spectrum aged 21 to 25 have ever lived independently. That's a specific autism problem. Double the number of non-autistic, intellectually disabled people have lived independently at that age. That is tough reading for families with autistic children, and tougher still for the autistic adults living the experience.
When Spike was diagnosed with autism, we asked the paediatrician about what Spike's future might look like. He would not be drawn and I accepted that. Spike was 2.5 years old! And so I put off thinking about Spike's adulthood and the far, distant future. But the future is coming and prudent people plan for it, so we try and engage with these questions about where we see our boy. As children grow, all parents can pare away some of these hypothetical future paths. A line is drawn through "concert pianist", "fine artist" and "theoretical mathematician". I can see that the paring process for families like ours and McGovern's is more brutal.
While we face many similar challenges, we are not as far down the road as McGovern and Spike does not have the same level of learning disability. He is hard to pin down. Professionals describe his profile as "spiky" (how apt!), with areas of both great strength and challenge. Like many autistic kids, motivation and engagement are sometimes significant barriers to learning, but if he decides to learn something, well - he might be as able as the next kid, potentially more so. And so we are tantalised by the possibility of these paths. Which of them should we attend to? Thinking pragmatically, Spike's future is probably not going to follow a typical trajectory, but how far off the trajectory will it be? These are the questions which make planning for the future so difficult.
Humans have a strong need to be able to predict. If we can predict, we can control the variables and adjust for the optimum outcome. Some futurists have described a taxonomy of futures - the possible, the preferable and the probable. Ben and I spend a lot of time cycling between these taxons, making plans for the probable, sometimes struggling to fully commit lest we eliminate the possible. To as great an extent as possible, we must let Spike lead. I mean, of course we must. It's easy to lose sight of that though, when worrying about whether he could or should do GCSEs, or when trying to strike the right balance between traditional schooling, supporting his areas of need and just being a kid. What is preferable is that his future (and the future of all children regardless of the challenges they face) contains opportunities for him to be joyful and content. It is patently clear what makes Spike happy. In the end, we must guide him to show us the future he wants. We'll work as hard as we can to ensure that it is built on sturdy foundations. I cried mixed-up tears of I'm-not-sure-what-emotion as I read McGovern's concluding words, "Your future should look like the best parts of your present". Well, there's something wonderful for us all to aim for.
Want to read more? Where the future started.