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Lily Muffet

Proud to be an Aspie

I have recently been diagnosed with Asperger's at the grand old age of 46 (2 years ago). I also have Ehlers-Danlos Syndrome (EDS) as well as a few other things to add to the mix.

I discovered a strong link between these conditions when researching muscle problems in EDS, which led to the biggest "aha!" moment of my life. As soon as I discovered the world of Autism in females I knew inductively that this was the missing piece of my personal jigsaw.

Since then we have discovered that I'm not the only Aspie in the family. First it was my son who was diagnosed (at the age of 26) followed by my daughter also in her 20s and finally my husband. There are a few other family members who may indeed be on the spectrum too but we will probably never know for sure.

So, I now have a new "special interest" to add to my long list of special interests!

The sad thing is though, that although I was absolutely over the moon to get my diagnoses and find my place in the world, I can't help but grieve for so much that could have been so much less painful for us all. Especially my children. As a result of never being diagnosed they both grew up suffering terrible misunderstanding, pain and a lack of self worth. They developed severe mental health problems as a result of trying to fit into a neurotypical society and spent their entire childhoods and young adulthoods unhappy and struggling in every way.

We are all now trying to reframe our lives and adapt to the world in whatever ways we can with a new perspective whilst fighting to find help and support.

My personal overriding emotion is one of peace and happiness at finally knowing who I am and allowing myself to be that person.

So here I am, I would love to hear from other women who were diagnosed later in life, perhaps with EDS or other conditions to cope with too. I would also like to read stories of how other Aspie adults have coped with their grown up children being diagnosed so late.

I would especially like to hear from others in Belgium. It is a lonely experience being an Aspie in a different country to the one where you grew up. I love it here, but the one thing that is missing for me is to be able to really share the experiences of a female adult with autism plus EDS in French or Dutch. I have been learning both languages for many years, despite the added learning difficulties that my disabilities bring to the classes, but will never achieve the level I really need to join in conversations in French or Dutch. I get exhausted from trying to express myself in my own language - English!

So if you are an older female with Autism and EDS who would be happy to make contact I would love that. Especially if you live in Belgium or are even an expat in a different country.

In the mean time I am looking forward to being part of this forum and contributing anything I can for others on the Autistic Spectrum.

Best wishes to all,

Hi Lily, welcome to the forum. Also an older female who's known for three years or so. There are several females here who found out later in life about autism. There is one person here who I know of as being Aspie with Ehlers Danlos sydrome. Perhaps she'll answer as well in future. There's also the 'Mighty' a website with personal accounts of EDS: https://themighty.com/ At this point the only one I know of.
Goedenavond, Belgian here, speak dutch, mid forties, diagnosed a few years ago

i have looked for support and found none

my key to happiness: accepting yourself and realising that you are different, that doesn't make you 'wrong', you are no less entitled to feel happy about yourself than normal people, and your opinions are just as valid as anyone else

my solution = coping mechanisms:
- headphones (almost always)
- quiet time (need a lot of time alone)
- restaurants, shopping, public transport ... outside of rush hours
- conversation cut off time at night, try not to talk after 21:00
- regular intensive sports to empty my head and release excess energy/frustration
- set boundaries to unavoidable social interactions (max 2 hours)
- hats to stay out of direct sunlight
- try not to live in town (working on that one)
- public transport (pay extra for first class on trains to avoid crowds and noise - usually)

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