What is it you want, exactly?

I was recently asked to describe what I believe that ‘children with autism and their parents/carers want’.  It’s a good job that there was no word limit….

I answered that we would like:

1. our concerns to be properly considered and fully explored by professionals that are trained to and invested in understanding the subtleties that can be present in ASD;
2. not to be made to jump though hoops or be obstructed by unhelpful gatekeeping when navigating ‘the system;
3. early diagnosis and appropriate intervention to be a genuine aim since we know it improves outcomes;
4. our children not to develop extra problems – quite frankly they have enough to deal with;

“We don’t want our children to develop serious long term mental health problems just because they went to school – remember, the problem with forcing a square peg into a round hole isn’t so much the effort that it takes but the damage that is caused”

• the identification and removal of the many perverse incentives within the system;
• all staff to have a good understanding of ‘reasonable adjustments’ for children with sensory and social communication difficulties, very many of these could be met within existing resources;
• to be genuine partners in care and education;

“One child I know specifically asked for it to be written into her Educational Statement of Needs that the “school staff must to listen to her mum”.  Her mum was the only person she felt able to explain her difficulties to.”  

• where they exist, the differences in communication needs of the parents to be understood and sensitively supported (as opposed to exploited);
• the system to be less fragmented within health;
• clear accountability, responsibility and professionalism from staff;

“It sometimes feels as though the parents are expected to behave ‘professionally’ but that the professionals are allowed to be ‘stressed’ ‘exhausted’ and so on.”

• professional integrity in completing assessments and identifying needs in a way that is uncoupled from budgetary responsibility;
• for expert assessments to be just that: not a list of poor judgments, assumptions and the opinions of those even less knowledgeable;
• clear systems for collaborative working between social care, education and health (I think that issues around perverse incentives undermine this);
• unconditional positive regard: a realisation that most parents and children are doing the best they can – a removal of the ‘blame culture’;
• recognition and removal of ‘unconscious incompetence’ and ‘confirmation bias’ which seems to plague some parts of the system (particularly education);

“This does not necessarily mean that we need everyone to be an expert: moreover it means that we need everyone to be aware of their limitations and to be open to listening to and learning from those with expertise in neurodevelopmental disorders.”

• for everyone to know that this isn’t about labels, or funding, it is about:
  • enabling our children to understand and value themselves and to be able to find like minded people with whom they can connect with ease and
  • as parents to be able to understand and interpret behaviour so that we can support our children with care and understanding that is consistent with their needs.

In addition, many children they will tell you that they are desperate to: 

• attend a school where staff ‘get it’ and a culture enables their needs to be met easily;
• be taught in a way that enables them to learn;
• be taught in an environment that makes them feel safe;
• have friends and have fun;
• have the access to the opportunities and experiences they see their neurotypical peers are able to take for granted;
• to have their views:
  • skilfully elicited,
  • properly heard, believed and understood and then
  • incorporated into to plans that are made about them.

What do you think?  What is missing?  Clearly the elephant in the blog (so to speak) is the whole vile “your child’s needs will only be assessed, then met… if you appeal then take us to tribunal”… situation, but I couldn’t find a way to include that politely in a job application.

Elephants.  There are a lot in this system aren’t there?  Personally speaking I quite enjoy pointing them out!

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