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NAS88196

Hi, My name is Margaret, and I am a new member.

I was only diagnosed aged 59 during my degree, and it was a shock but a relief too, as I finally understood why I struggled so much.

I have four beautiful daughters, and two sisters older than me who have since been diagnosed with Autism too. It hasn't been easy, but now at least I know why I can't make or keep friends, and why I am always a square peg in every round hole. 

I have spent most of my life caring for my youngest daughter, who has Crohn's, and running community projects in Sussex. When my daughter got really ill, we moved to London to be near her medical team, which I found really traumatic. I have been here 11 years now and still feel totally lost. I hardly ever go out and get lost when I do, and I find the noise and traffic so hard to deal with.

It has taken a long time to get used to being diagnosed, and my doctor refused to accept it because it was done at the university. I have never had any support or help of any kind, so I have just been adapting to this new understanding by myself.

Now I am ok with it, but having retired last year, I am finding it hard to figure out how to live such an aimless life. I have always been either caring or running busy projects, but my daughter is now in University herself in Scotland, and I am starting my life again. So new understanding. New city, really, new lifestyle and truthfully its all a bit much. I stay indoors day after day and watch TV, but I don't want this to be the rest of my life.

Is there anyone else on here who has had such a huge change and has adapted to it? I would welcome advice. My other children no longer visit as they have taken the diagnosis very hard, fearing I have passed it on to them and their children. 

I used to be really ambitious and planned to be a solicitor, but now I just watch TV. I am doing some courses online to help myself get back to life, but I find living in a city a nightmare after coming from a small seaside town. 

I am a bit excited about the possibilities of the future without caring or small children, but daunted at the big-ness of it all. Would love to hear from others who have been late diagnosed, or had to face big challenges in life, and have made it through. Thank you

Parents

  • Hi Margaret and welcome. I am a fellow diagnosed-at-59er and know that it takes a lot of adjustment.

    Hunkering down and resting is OK and may have been what you needed after all that giving and caring for others. I can imagine London is quite an overwhelming sensory experience too. I live in a village and I appreciate the quiet. Maybe getting back to a quieter place may prove part of your journey...

    Your being a bit excited is a sign you are getting ready for what's next - your time to explore your own needs. 

    I am recovering from deep autistic burnout and know that feeling of being daunted by big stuff. What is working for me is turning that into lots of successive small experiments to see what works for me and what doesn't. Keep what works and add to it. To borrow a phrase from an advert, 'incremental becomes monumental'.

    Early days, but it seems to be helping me. My experiments have been things like 'go to nearest cafe', 'say hello to other dog walkers', 'listen to autism podcast', 'have a nap', etc. My natural curiosity and playfulness are coming back through this. Having a dog has opened a new set of experiences for me.

    I am sorry to read that you don't currenttly have the support and presence of your other daughters. I hope that over time they come back to you and recognise that you have given them life, as well as understanding thar autism isn't a fault or flaw, but a neurodifference with its own strengths. 

    You are whole and enough, and worthy of love and compassion from yourself and others. I wish you every success and please keep us posted on how it's going.

Reply

  • Hi Margaret and welcome. I am a fellow diagnosed-at-59er and know that it takes a lot of adjustment.

    Hunkering down and resting is OK and may have been what you needed after all that giving and caring for others. I can imagine London is quite an overwhelming sensory experience too. I live in a village and I appreciate the quiet. Maybe getting back to a quieter place may prove part of your journey...

    Your being a bit excited is a sign you are getting ready for what's next - your time to explore your own needs. 

    I am recovering from deep autistic burnout and know that feeling of being daunted by big stuff. What is working for me is turning that into lots of successive small experiments to see what works for me and what doesn't. Keep what works and add to it. To borrow a phrase from an advert, 'incremental becomes monumental'.

    Early days, but it seems to be helping me. My experiments have been things like 'go to nearest cafe', 'say hello to other dog walkers', 'listen to autism podcast', 'have a nap', etc. My natural curiosity and playfulness are coming back through this. Having a dog has opened a new set of experiences for me.

    I am sorry to read that you don't currenttly have the support and presence of your other daughters. I hope that over time they come back to you and recognise that you have given them life, as well as understanding thar autism isn't a fault or flaw, but a neurodifference with its own strengths. 

    You are whole and enough, and worthy of love and compassion from yourself and others. I wish you every success and please keep us posted on how it's going.

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