Joining the threads

If looking after children is a full-time job, looking after autistic children is more like running a small franchise. This blog is about the various health and education professionals we’ve dealt with since Euan was first diagnosed five years ago. I should preface it by saying that as individuals, they’ve mostly been professional, helpful and informative. I recognise they have their own demands and pressures, that working conditions are far from ideal and probably getting worse. But from a parent’s perspective trying to bundle up that care and manage it can be a hideous tangle.

In the context of both our children we’ve come into contact with educational psychologists, speech and language therapists, occupational therapists, social workers, paediatricians, and clinical psychologists, as well as various school and nursery staff. (This is quite a short list: plenty of other parents would add sleep counsellors, dieticians, various other doctors and therapists, and even the police.) Some of them are assigned fairly quickly; for others (such as occupational therapists) there is a waiting list. Many services are only available once your child has been diagnosed – which itself entails a wait of between six and 18 months. Most of them carry out assessments and write reports. These often contain a referral to another expert or therapist – which means going on another waiting list and adding yet another phone number to the lengthening chain.

The exact nature of their roles is not always clear to begin with. For example, an educational psychologist will assess your child’s suitability for a certain type of school: should they be in mainstream or special needs education, and what classroom support do they need? It’s only later on that you realise that this is an obligation to the education authority, not the parent, and that their main criterion is to fill places in schools, in the context of increasing budgetary restraints. Once you understand that, you can start to understand why and how they make their decisions.

From the parent’s perspective, the hardest and most daunting aspect of the exercise is getting everyone to work to the same script. Since none of them has a leading role, that task falls to the parent. Magteld has spent much of the last three years organizing meetings between schools, health professionals and therapists, sometimes as many as three a week. And still people ask her whether she misses working full-time. The more frustrating thing is that after putting in so much work to bring people together, the parent is often the one whose voice is crowded out.

The other major issue is communication. Schools, doctors and therapists who aren’t in regular contact seem incapable of talking to each other (this is one advantage of special needs education, where therapists work directly with the school). Contact with parents is even more sporadic. When Euan was transferred from mainstream to special needs education, none of his records went with him. All the work that his class teacher had done to understand and accommodate his needs dropped into a black hole. In the meantime, Magteld had fought a largely fruitless campaign to keep in contact with his educational psychologist. After not hearing from the person for months, we learned from the school that they had been in to see him every week. No reports, no feedback.

Professionals will protest that they are doing the best they can for your child, and mostly they are, but this isn’t the issue. Imagine a house being decorated by four different teams, each with a different expertise. But instead of working together on the whole building, they each take one wall and devote all their energies to it. None of them work together or even pay attention to the other three walls. So one wall is weatherproofed to the max but unpainted, another is immaculately painted but the guttering hasn’t been done, and so on. And none of the teams ever stops to ask the homeowner if they’re happy with the state of the house. That’s how managing the care of an autistic child often feels, with the parent in the role of the homeowner.

As a rule, experts are by definition the best placed people to make these decisions, but it's parents who have to live with and manage the outcome. For that reason they need to be at the hub of the decision making process. Yet all too often, keeping them updated is an afterthought at best. Pushing them to the periphery because they’re ‘awkward’ or they ‘don’t understand’ ultimately wastes more time and effort than it saves – and it does nothing for the child.