How Disability Service Professionals Can Support Neurodiverse Families

It is now generally accepted among the medical and clinical community that there is a genetic component to autism. Families with an autistic child are often spectacularly neurodiverse and there are many parents of diagnosed autistic children who are autistic themselves — with or without diagnosis, with or without self-recognition.

If you are a health, social care or medical professional, please be mindful — an autistic child may have autistic parents. We need to extend philosophies of diversity and inclusivity to parents as well. As an non-diagnosed autistic mum to two diagnosed autistic boys, here is what I would like the professionals working alongside me to know.

I hate meetings. They are exhausting. I don’t want to have to listen to other people telling me how autism is — unless they are autistic, and then it is my favourite topic of conversation. But I do all of the above because I love my children and want the best support possible for them.

Happy and resilient parents are more able to manage challenges. If you work with autistic families, here are some easy adjustments for making meetings more bearable.

Meeting Environment

How inclusive is the meeting room or venue? Are there bright lights, repetitive noises, particular smells? Have the parents had to battle through crowds, transport systems and the unknown to attend? Include time for comfort breaks. Check whether the temperature and lighting is comfortable.

Change

Last-minute changes or spontaneous additions are likely to heighten anxiety, so pre-plan as much as possible. Forward agendas, attendee lists, venue details and schedules as soon as possible. Allow adjustment time for any unexpected events or issues that arise during a meeting.

Language

Be mindful that metaphors and jargon are not going to be as easily understood by an autistic thinker, and we will take longer to understand language presented in this way. We may still be working through what “blue sky thinking” actually means and miss crucial information given just after.

Regulate the pace at which verbal information is given. Build in processing time, use visual aids (whiteboards, projections) and regularly check in to ensure key information has been digested.

Multi-Tasking and Organization

Some people are skilled at these tasks, some people are not. Attempting to take notes, process the verbal dialogue and contribute at the same time can be overwhelming. Allow alternative record keeping without assuming there is an ulterior motive. Using a dictaphone or mobile phone to make an audio recording allows us to revisit, fact check and not worry about misunderstanding content.

Offer time outside the meeting to confirm there has been an agreed understanding.

Take responsibility for organization and give clear confirmations with each stage. This will help minimize a lot of pre-meeting anxiety.

Presentation

Many autistic people have their own unique style of dress, and be unable to fully appreciate the expectations of meeting attire due to sensory needs and an alternative theory of mind. Live with it. What we wear means nothing.

Our emotional regulation may differ from usual meeting standards. We’re working extra hard to be there and are discussing our beautiful children. Don’t assume instability or mental health issues — give permission to access rest breaks or to leave the room.

Be aware that evidence of lengthy research on our part or detailed, formal correspondence from us does not mean we are trying to control, manipulate or challenge you. We can just be rather amazingly thorough in undertakings that matter to us. It is a sign that we care!

Even with all these adjustments in place, it is still likely that we will be left exhausted. Please carefully consider how often face-to-face meetings are genuinely needed. Quality over quantity!