Neurodiversity 101: The loss of a dream

I am being somewhat indulgent this week. I don't usually like talking about grief because I know people often feel very uncomfortable. This year I have witnessed the sympathetic head tilt and then the pause....... in order to switch to another topic.

It is one year since my husband died. We were together for more than 45 years. This has been a turbulent and tough year with emotions that I have not had any control over (which has been interesting, exhausting and at times very annoying).

My family and close friends have been truly amazing. Grief I now know is definitely a product of love and we have been closer than ever holding ourselves up.

People have said to me so many times during the year: "I am sorry for your loss" and I would say to myself (cynically and at times with amusement) .... "I haven't lost someone, I didn't drop him off somewhere and forget where I put him, I know where he went" !

But today I think I understand what some people are actually saying.

He died and I have lost something huge in my life.

I have lost my friend and life partner.

I have lost the comfort of companionable silence;

I have lost being part of a couple - which seems to bother others in working out who I now am;

I have lost the potential to do things we planned to do together;

I have lost celebrating family events with him that we have not yet even planned..

I have lost...a lot... I didn't even realise I had till I didn't have it any more...

What has this got to do with neurodiversity?

“Every one of us is losing something precious to us. Lost opportunities, lost possibilities, feelings we can never get back again. That’s part of what it means to be alive.”― Haruki Murakami

Recently I have been talking to people about late diagnosis of neurodivergent conditions and some of the feelings this can evoke of intense loss. Some people have expressed to me their feelings of loss and a wish to turn back time so they could have rewound what happened and created a different life for themselves.

The first thing to think about is that you are the person you are today because of your experiences both good and bad and we don't have a reverse button. So how can we take those past experiences along with this new knowledge and gain from this rather than keep mourning the loss of a life not lived. If we are not careful we can get stuck in a cycle of 'only ifs.."

Grief is a universal emotion and communal grieving is something recognised in most cultures across the world. I wonder if the way adults come together to share their experiences of gaining a diagnosis of a neurodevelopmental condition or neurodivergent trait in adulthood is a way of processing what has gone and allowing them to move forward. In Native American culture , the Lakota tribe elders use the phrase “mitakuye oyasin”, meaning “we are all related”. The death of anyone in the tribe is felt by all.

All of us will certainly grieve in our life times

None of us can go through life without losing someone we care for. I think sometimes we try to quantify what is real or big grief..i.e. the loss of a child, a parent or a partner we recognise as a big life event and perhaps minimise or suppress other experiences of loss someone may be having in their lives and be more dismissive. It may be seen as more 'trivial'.

The reality is that every person's experience are valid and different and we can never tell what is going on in a person's life and the impact different events are having on each of us.

This year I have walked and walked and walked. Walking has helped me to process how I feel and it also has connected me to the world around me. I have seen the seasons move on regardless of whether I want them to or not. New life in spring time, I have always thought as a hopeful time for me. In the morning, when I walk I often see swans on the river and it has made me also wonder how often we may see someone gliding along seemingly coping well but the reality is they are waggling their legs desperately fast under the water just to stay afloat.

Loss and future dreams

I think I now realise what loss is. It is the loss of our dreams and the pain, the need and effort to see and create new ones.

If you are reframing who you are and I certainly have had to do that this year... new persona (single rather than being part of a 2), new house, new city to live in and a lot more 'news'...I know it takes time to do so.

I have learned grieving the loss of someone close to you (and that may even be your identity) takes time and no-one can say how long it takes to come to the recognition of what the new you looks like.

People have said so many times this year to me you need to 'be kind to yourself' and I think I just want to say that back to you. After the loss of your past we have to gain a way of seeing ourselves differently and recognising we can have new (and different) dreams for our futures.

“Hold fast to dreams, for if dreams die life is a broken-winged bird,that cannot fly.”― Langston Hughes

Blog Author

I am Amanda Kirby, CEO of Do-IT Solutions a tech-for-good company that delivers consultancy and guidance, consultancy, training and web-based screening tools that have helped 10s of 1000s of people.

Contact us and we can discuss how we can help.

We strive to deliver person-centered solutions relating to neurodiversity and wellbeing.I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity.

I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; most important of all I am a parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself.

I have written 10 books so far.Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce . My 11th book came out in 2023 Neurodiversity and Education . Theo and I are writing a new book this year about parenting and neurodiversity!

*These are all my own views.