I was at once overwhelmed, and underwhelmed, by the help my son received for his autism in his pre-school years (from diagnosis at age three, to starting school at five years old). Overwhelmed, because I found myself swamped in so many therapists than my daily diary of appointments became a bewildering list of newly-learnt acronyms (PT, OT, ST, EP, EIT, ESW, SW); and underwhelmed because I wanted their services to arrive faster, stay longer, and happen more frequently. I desperately needed some sort of over-view and co-ordination of what was happening with my son, so I’d find myself often wishing there was just an “autism expert” instead of a bunch of – essentially – “symptom experts” (people addressing problems with speech, movement, behaviour, etc).
I often found myself angry at the therapy team; like they weren’t listening to me, or didn’t understand my son or didn’t understand autism itself. I was annoyed that they took six-week breaks, and didn’t have all the answers, and sometimes made things worse.
Looking back over that two-year period, I am amazed at the level of help we received, all of it for free (tax-payer funded to be precise). And a lot of the ways they did things that bothered me, I can now see as not so bad, or even for the best.
Like approaching autism primarily via its symptoms, with experts in each area as required. Autism is, after all, defined by symptoms. And even though the many-person/ diverging-theories approach I thereby had to interact with were sometimes contradictory and hard to manage, having such a diverse range of experiences and approaches available to us through this myriad of specialties, provided different solutions and perspectives to the problems we faced. Allowing me to take the best bits from the best minds among the group, and apply them as best suited my son. This approach required me to be brave enough to speak out when something wasn’t working, to identify the potential and actual conflicts in advice, and to be proactive with mediating the information so it was tailored to my own son; not blindly accepting that every piece of advice relevant to an autistic child was always relevant to my child. Autism is, after all, highly diverse in the severity, and in the manifestations of the defining symptoms. What might have worked for another autistic child, wouldn’t necessarily be relevant to my son.
Would a single “autism expert” have been as effective as the team? Maybe. But I can easily see how an imagined expert in autism would struggle to match the wide range of expertise in each symptom area that I ultimately had access to. Each person dedicated to assessing and working on their specific problem area, each with years of training and experience that arguably combines to be mightier than a single person’s training and expertise. The fact that it was hard to co-ordinate all their efforts and therapies into a coherent and non-contradictory whole, is not necessarily only fixable via a single all-encompassing expert in autism. In effect, I became the co-ordinator; the one person in the team with the total over-view. And really, that is perhaps how it should be. That role was not an obvious or easy one, particularly for me still coming to terms with autism and my son, but I was ultimately best placed to become the “autism expert” of the group.
Another way in which I think they maybe did right rather than wrong, with the benefit of hindsight, is in taking those times off from such regular visits. It turned out to be vital that my son have breaks from the learning and persistent interaction, otherwise both he and I would get overloaded. Being busy with lots of meetings and therapists, definitely made me feel like we were achieving something, but “being busy” isn’t the same as making progress. It was vital that new lessons were given time to be absorbed and put into practice. It was also vital that I stepped forward as his mother and teacher and therapist, not relying on the professionals to hold my hand too much.
I came to understand that their job was to set me up to do their job for them: They would teach me the skills, knowledge, understanding and methods that would allow me to not need them anymore. Afterall, I am there day and night, and I will be with him until the day I die. It is vital that I can do what needs to be done. They generally continued to make themselves available for contact during emergencies in those break periods, but in time I learnt to not need them when new problems arose; they had taught me the methods I needed to sail that boat without them at the rudder.
Would it have been better if they hadn’t taken such long breaks and had more intensive contact during the work periods? Maybe. But I at least now understand that there was benefit and reason behind those breaks – and not just because they had huge work loads and a ridiculous number of clients. I’d got too caught up in the “being busy means progress” mind-set.
But part of the reason I’d got so caught up in that mind-set, and that I was often annoyed with the therapists, was my personal mental state at the time as I came to terms what autism meant for my family; “being busy” at least made me feel like I was doing something in the face of all the problems. Anyone I interacted with during that time (including therapists) were interacting with a scared mother. Why did this happen to my son, what does it mean for his future, and for my future? Is someone to blame, can anything be done to fix it? How do I cope with the intolerance, ignorance, and judgement, by strangers and the people I love?
I personally needed help for my own well-being, but so often “help” back-fired and made my and my son’s life worse than prior to the intervention; so ultimately I’d decided to turn down any offers for personal help and just focus all my energy and passion on my son and the help he needed. Looking back though, I am glad they offered the help anyway. I am grateful for the people and the organisations that tried to make my and my son’s life better, for at least caring enough to try. I wish I had been more bold with telling them where their offers of help were going wrong or making things worse; though I think at the time I didn’t have the knowledge or confidence to make myself heard.
The system in place to support parents and their autistic children, as they learn about autism and how to live with it, are imperfect, with plenty of room for improvement. There are clearly areas of high need that are not being met, or being met poorly. There are some great therapists, making poor and consequential decisions; things don’t always go as planned, even with very careful and loving planning. But there is support, and expertise, offered through the public system, and supplied by some amazingly dedicated and passionate therapists. There are people constantly reviewing and assessing the outcomes and benefits of the services offered. I have good reason to believe that things will improve for future families.
The level of care and involvement of the therapists, was really quite impressive. They had to put up with my screaming violent son, and his annoying perfectionist mother. Sometimes the therapists cried along-side me, when they saw the very real suffering. Sometimes we laughed and rejoiced together, when my son would surprise us with something new and wonderful. My son’s successes gave them very real and heart-felt joy.
So here’s to you, my son’s therapists, for doing your best and helping my son and I to be our best too. I wish you could see him now. I know you’d be so proud of how far he’s come and how well he’s doing; you need to know that you helped that become a reality. I want you to know that though I remember our disagreements and frustrations, that I also remember all those hugs you gave my son (once he started allowing hugs!). I remember the times you sat him on your lap, and smiled so genuinely at my amazing little boy. I remember all the hugs and kind words you gave me too. You were a part of our family for a time; seeing into our otherwise isolated and hidden world. You made me feel like we hadn’t been forgotten after all.