It's only 2.5 months since Harri's diagnosis. But boy it seems a lot longer. It is impossible to identify what has been the most difficult part to date. But one issue that pops into my mind intermittently and instills a level of anxiety greater than many of the other concerns is the long term future. As Harri grows and becomes less a toddler and more a little boy his Autism comes into greater focus. His repetitive speech, fixations and sensory seeking behaviours are more pronounced as the days roll on. The realisation that comes with this is we are yet to identify the true extent to which this child will be affected by his ASD.
What this means in practical terms is difficult to say, and that is what generates the anxiety. The uncertainty that comes with knowing there is a difficult path ahead, but not what the course will look like. Probably the toughest unknown is whether he will ever live independently. Most ASD adults do not. There are group homes, and supported accommodation options, and I imagine hostels with full time carers for the most severly affected Autists. And there must be a large proportion of adults living at home with ageing parents. There are also respite services to give parents a rest when they are close to breaking point. This is all very nice in theory, but who could look at their small child and imagine a life where they will forever be dependent on the support and service of others and feel ok with that? I certainly don't. In fact I find it to be too sad to ponder for long.