Families and Neurodiversity: Linked Up Services and Helpful Resources.

I love it when a plan comes together.

Even more so, I love it when planned services come together to discuss joined up health and social care services and how to make them neuro-inclusive.

Lynn in the hall after speaking at the 3D Drumchapel event.

Linking to the right services at the right time.

Luckily for me, this sort of event happened recently, organised by 3D Drumpchapel, as part of their work supporting families in the community. Families and professionals came together to learn more about neurodiversity and to work out how all services can connect to ensure families get linked into the right services at the right time.

Inclusive systems and service design are passions of mine which comes up frequently in my work with tech teams and my engagement committee role with the Government. Tight-budgeted, essential-services are made for the masses, meaning that those with less typical needs are often neglected. I love to work with those with lived experience of barriers and share their views with decision makers. 

It's great that, increasingly, we proactively consider different needs. We look to our diverse society and recognise that exclusion is a common occurrence for many groups.

My main mission in life is to create an inclusive world where everyone belongs.

Lynn’s doodles from during the event. Counter to norms, doodling is an effective method for helping neurodivergent people to concentrate.

Making inclusion a reality.

Sadly, I do not have three top tips that will solution-ise it all. Many policies and community groups are committed to make inclusion a reality, such as the Equality Act 2010, the Public Sector Equality Duties, Equality Impact Assessments, the Learning Disability Autism and Neurodiversity Bill, the Human Rights Bill and the Disability Commissioner Bill.

At the 3D Drumpchapel event, we heard about the current state for many families and services – waiting lists, overstretched professionals, services where need far exceeds demand and children in ongoing crises. It was a privilege for me to speak at this event and offer some insights. I found myself (perhaps surprisingly) nodding along to presentations from speech therapists, diagnosis leads and parenting groups. Often it can feel like there is a ‘them’ and ‘us’ dynamic between Users and Professionals, but there was a sense of shared purpose in the room. Everyone left the event with a ‘test of change’, ensuring that our words lead to action. I’m excited to see where these conversations go next….

But right now, what can we do? Many people were asking me for advice on this. What can parents do while they are awaiting diagnosis and support for their neurodivergent child? How do we, in the face of the sizable shifts that need to happen, try to meet the needs of our children, and also those of the parents and professionals?

Resources parents can use today.

Here are some things that might provide some value for now.

• Pooky Knightsmith – Start with Pooky. She’s an autistic author and speaker who specialises in meeting additional support needs. She shares resources around making school more inclusive, connections based on safety and how to support executive dysfunction.

• The OT Butterfly and Sensory Audits – To look more into meeting specific sensory needs, do a sensory checklist with your child and then create a sensory diet to proactively meet these needs (this is adapted from the book ‘Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues’ copyright (c) Lindsey Biel, OTR/L, MA, and Nancy Peske, 2005, 2009, 2018 and beyond). For more support around this, look at the work of The OT Butterfly who runs a programme called ‘sensory detectives’ and shares information around sensory seeking, tantrums vs metldowns, and inclusive classrooms. Create a sensory den to be a safe retreat for your child to regulate - I love a weighted blanket and a Galaxy Projector light (Disclosure: Some links in this post are affiliate links, which help support my content creation).

• Fizzy Pop Bottle – Get clued up on the fizzy pop bottle analogy (image below). This explains experiences of post-school collapse and melt-downs. Often neurodivergent children bottle up their frustrations and experiences throughout the day, leading to a ‘final straw’ trigger and a breaking point moment for emotional dysregulation. Proactively try to let out fizz throughout the day - through structure, routine, a sensory diet and emotional regulation - to reduce the build up.

The Coke Bottle Effect process shown with fizz building up over time due to stress and an eventual explosion (photo credit to Kent Autistic Trust).

• Set up the Environment For Success – If you are bored of blank stares and repeated instructions, think about how you can adapt the environment to meet the needs of your family. I recommend the book, ‘Organising Solutions for People With ADHD’, by Susan Pinksy, which shows you how to adapt rooms and systems to work for those with executive dysfunction. Simple things - like having one jacket hanging near the door and using hooks and baskets to store things – reduce daily friction and set you up for success.

• Polyvagal Theory – Crucial to working with neurodivergent people, is understanding polyvagal theory. Many neurodivergent people have sensitive nervous systems and this explains the various states that an individual can be in. Over time you will learn when your child is in their ‘fight or flight’ mode which means you can proactively try to de-escalate the situation. To feel safe, we need to be operating from our automatic nervous system, which opens us up to connection.

• Regulate Yourself – Co-regulation is crucial. Practise staying calm and consistent, even when faced with challenges. Bring curiosity, not judgement, and, as hard as it is, meet external stress with a regulated nervous system. Children look to their caregivers to feel safe and co-regulation will support your child to come out of their threat state. For more on this, have a look at the book, ‘When the Parents Change, Everything Changes’, by Paul Dix.

• Advocate and Adapt – Schools, healthcare settings and society may present ongoing challenges for your neurodivergent child. Build relationships with professionals willing to listen and advocate for small adaptations that will support your child within the current stressful system. For example, tell the teacher about sensory needs and ask for a couple of breaks throughout the day for your child, or, when working with healthcare settings, explain how your child best communicates and ask to see consistent professionals to help them feel safe.

From the above, you might be thinking, ‘But that’s so much work! How am I supposed to be an advocate and an OT and a parent?!’.

Indeedly, it is a lot of work.

And so is being a neurodivergent child in a world that is not made for you.

Emotional regulation and learning about yourself from a young age is, in my opinion, the single-most valuable skill you can gift your child. Every single neurodivergent child is brilliant and beautiful and, yes they may struggle at times, but they deserve to be invested in to flourish.

I believe in them. I believe in you doing this work.

Over the next 20/30/40 years, systems will change and the load will ease.

Right now, we gotta support our children the best we can. I hope the above helps slightly with that.