What is it you want, exactly?

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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10 thoughts on “What is it you want, exactly?

  1. from anon re: the elephant….. “it’s a fair point and too common to be comfortable. Maybe a whole separate blog about hoop jumping, local policy falling short of legal requirements and backed into a corner when unreasonable use of public money is spent on legal defence just to get the stuff written down. Is it too much to ask??
    And then another elephant in the room……after all that time, effort and expense, the plan is ignore…..bring forth the EAR!!”


  2. My child has suffered severely as a consequence of failings from numerous professionals. Tribunal appeal does not guarantee the provision will then be provided and another time consuming stressful battle follows!


  3. What do you do when the child presents no signs in class, ASD outreach expert sees nothing. Stands the other side of the playground, (child was aware, sensed she was being watched) hears nothing. Reports …no signs and good coping strategies.


    1. Sorry for rushed response but have you seen the blogs on here re ‘fine’ and ‘masking and blending in’ and Peter’s story? You can find them using key words in the search bar…. so sorry but I totally get what you are saying. Also staff cant see what they aren’t trained to notice…. x


  4. Not being acknowledged as were the experts, work with us not against us! Be honest and transparent, we’ve had enough of the excuses, your child doesn’t fit the criteria for EHCP! There is no criteria under send code of practice, what difference does it make if I quote this “No difference” we just get told over and over!


  5. Yes! All of this! I think you’ve covered it all…. probably. Apart from letting everyone know how unbelievably stressful it is for parents to have all this happen to them, instead of everyone working together for the best solution. So much damage done, to either the children, or parents, or both 😦


  6. So very true and sad to say that I know it’s true because I am still battling the system and struggling to get my son the help he desperately needs he is currently number 38 on a waiting list for a neuro developmental pathway. He is 11 and has agoraphobia bought on by panic attacks and anxiety. Blown away.com


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