Embracing Difference

Neurodiversity Celebration Week felt like the right time to share my story around neurodiversity and the lived experience of my family in this area.

Let me start by saying I am not an expert on this area and I fully expect that this musing will include things that others more qualified than me will challenge or find fault with - I wanted this to be a personal piece as opposed to anything academic around this area.

Until 3 years ago, neurodiversity felt like a distance subject for us as a family, something I knew a little of from the work my Mum did within her role as a teacher (working in Special Needs as it was called) but with no direct experience.

My wife and I are blessed to have 3 beautiful children, all unique in their own way and with their own personalities and idiosyncrasies that reflects who they are. Gradually though, these things become more pronounced for our eldest child - the range of special interests (Tesla Coils, Rollercoasters, House Alarms et all), social skills, anxiety - culminating in us facing a situation 2 years ago where he was physically refusing to go to school. My wife and I saw this as an act of rebellion, an attempt to try and instead get time to watch TV, game or do anything else that seemed like more fun than going in to school. I remember us literally having to dress him in his clothes, pin him down to put on his shoes (not proud of writing that) and effectively escort/carry him in to school every day, peeling him off lamp posts and any other items he could grab in resistance on the way in.

We thought that in the battle to bring him back into conforming with expectations we could outlast him and win out, like he would just snap into gear and do what we wanted/needed him to do.

Knowing what we know now, I look back on this time with guilt and self-hatred. Our little boy was not rebelling against the 'system' out of choice, was not 'acting out' deliberately - he was terrified and his system could not cope with the demands being put on him. We ended up with a child in autistic burnout, broken by what was expected by him and this prompted the decision to remove him from school, from which he would not return for 9 months through to the end of Year 6.

In that time we also took the decision to get him assessed privately for autism as the more we read, the more we saw the signs that he might be different and that we owed it to everyone to learn more about how his brain works. We were fortunate to be able to do this privately - the state system is overwhelmed and under resourced to handle the volume of requests for such assessments and, for us, the wait could have been even more damaging.

Weeks later and following various assessments, we received the diagnosis of autism for our son, with a demand avoidant profile. I will not go into the details on this for today but I would encourage you to read and learn more about PDA as a profile of autism - yet another illustration of how much of a spectrum there is for autism and evidence that if you think of autism and immediately think of 'Rain Man' then you are not seeing how broad it is!

With a diagnosis came a greater sense of clarity and understanding for all of us - our son had something that said that he was different but also that he was not broken and that nothing was wrong with him - his brain just works differently to others. For us as a family it gave us reassurance - we were not just bad parents and had not failed our son.

It also gave us a new phase in learning - understanding more about what it means to parent a child with autism and a PDA profile. And let me tell you, it is hard and we continue to get it wrong more than we get it right at times!

It is easy to fall into a state of sadness when you find out that your child is different and doesn't conform to what we see as normal or the same as other children. I certainly felt that and look back now and feel bad for even allowing myself to view it in this way but also recognise that it is likely a standard response for many in similar situation.

Having a neurodiverse child does not mean that they are broken or less in any way but actually helps to shine a light on how society needs to continue to provide opportunities for all, neurotypical or neurodiverse, to live, thrive and succeed. My son is bright, articulate and intelligent (at times!) but will always be autistic and will always live with the things that reflect his neurodiversity. These should not prevent him from achieving what he wants to achieve in his life and our role as parents needs to be to support that and to equip him as best we can for the future, whilst fighting and advocating for him at every required point that he needs us. That has already got us to a point where he is now in a school which he enjoys (depending on which day you ask him and how his system is reacting) and we are seeing something of our little boy coming back to us from where we were.

We know that life will continue to be challenging at times and plenty of mornings, evenings and weekends can be laced with screaming, swearing and eruptions which are not him but a result of his autism. However, we embrace the madness that is our life and all that it throws at us and I recognise how important it is to continue to celebrate difference and promote awareness and the value of neurodiversity in our society.

As parents, we don't know how life will pan out for our son in the future as he eventually has to navigate the world in front of him but I hope we can equip him as best we can and that he encounters a society and employers who are educated and understanding of differences.

In the meantime, we are also awaiting feedback on a potential diagnosis for our second child for autism and ADHD so our journey with navigating neurodiversity as a family goes on (and may become even more complicated/challenging in time) but we embrace the madness and recognise all that neurodiversity is.