It’s been a month since I was diagnosed with an autistic spectrum condition. Whilst awaiting my appointment with the adult autism team my main focus was on whether on not I had an ASD. If the answer wasn’t autism I would be left with no answers, only issues. I didn’t give much thought to how I would feel if I was diagnosed.
After the diagnosis I hoped for relief, solutions, and a way of moving forward. I expected to feel good about this diagnosis, finally getting to the bottom of it all, after so many years of misunderstanding. I didn’t anticipate the variety of emotional responses that followed my appointment.
My first reaction was doubt. Almost instantly I doubted the diagnosis, perhaps I was being neurotic, perhaps the consultant was wrong. I couldn’t possibly have lived with undiagnosed autism for 36 years! So I researched. First the consultant, and when I was satisfied with his credentials, I moved onto researching the diagnosis further. After several days obsessively reading everything credible I could find on the topic it was so clear I couldn’t sit in denial any longer. I have an ASD, it fits, and all the information I found confirmed that.
Next, briefly, came the relief that I’d expected. I had my answer, finally after so many years of uncertainty I have a diagnosis which really fits. People will understand me better and in turn be more understanding. I will be able to learn the skills I need to cope better with life. Everything will be better now.
Then reality hit. I have been diagnosed with a lifelong condition. I will, most likely, always struggle more than other people to cope with day to day life. My life will be restricted and limited by my issues. I felt depressed, a little hopeless, even verged towards considering the point in my existence. Can I continue to fight my internal fight for the rest of my life?
I was grieving the loss of something I’ve never had but have always hoped that with enough determination I would one day achieve. I was grieving the possibility that I might wake up one morning and be the kind of person I’ve always aspired to be. The kind of person who copes, is popular socially, generally succeeds at life’s challenges. That will never happen, my brain is always going to be wired this way and getting my head around that fact is an ongoing process.
Mixed in with the grief was confusion about who I really am. I’ve spent my life trying to be average. Copying friends, and fictional characters trying to find the person I wanted to be. I’m not entirely sure who I am underneath all that. So many of the things I’ve chosen to do with my time were about fitting in. Trying to be successful as a human being I grabbed onto anything that I perceived would help me achieve that.
Now I’m left with very little idea about me, the things I like, the people I want to surround myself with, my dress sense, day to day preferences. These things have been so dictated by the question ‘what do normal people do to fit in?’ I don’t know the real answers anymore. Finding out will be a big part of the process of self acceptance.
In some ways when I strip away these layers the autism comes to the forefront more. When I’m not forcing myself to cope all day long with people, noises, tastes, and other choices which were never about me the autism is more obvious in the choices I actually want to make. Is this a bad thing? Should I consider suppressing myself permanently? Ultimately I don’t think that’s a realistic option since doing so has left me stressed, having regular meltdowns with serious self esteem and physical health issues.
I think there’s a middle ground. Allowing myself the space to do the things I need to do to be more relaxed and happy but changing my behaviour and approach in some situations for the comfort of others. Particularly those that I love and care about.
Getting to this point of self acceptance and improvement isn’t going to be easy. So I’m going to keep blogging as I go through this process of learning. I’ve decided to make my journey public as a resource for other people who might be going through the same kinds of things. For the, potentially, thousands of women just like me who are living with an undiagnosed autistic spectrum condition. I want to play my part in helping to change that.
I’ve just read your blog it’s very good my daughter Lizzie is 13 and I’ve been fighting for years and years cause I know in my heart she is autistic I’ve done the autistic courses I’ve gone to extremes for taking her off medication to prove to people she can’t cope without her meds I’ve actually got depression and anxiety because of it
Hi Anne-Marie. I’m sorry to hear that things have been so difficult for you and your daughter. I would strongly recommend against taking her off her meds without medical supervision, and definitely not to prove a point. I hope you get the help you need.
“I was grieving the loss of something I’ve never had but have always hoped that with enough determination I would one day achieve. I was grieving the possibility that I might wake up one morning and be the kind of person I’ve always aspired to be. The kind of person who copes, is popular socially, generally succeeds at life’s challenges. That will never happen, my brain is always going to be wired this way and getting my head around that fact is an ongoing process.”
This is spot on. I hadn’t realised that was what was going on, but you’re so right.
I’m a year down the line. I think I’m finding some things more difficult, but I’m also learning to pace myself better, to accept which bits are harder, to just not do some things that were never really me. I think it’s worth knowing, and I’m pleased I do.
It feels like, after so many years of not knowing, it will take time to find peace with this diagnosis and the issues around it. I’m glad to hear you’re making some progress.