Appearances can be deceptive. Outwardly, to the bystander, I’m the smiling, friendly blonde lady who is confident in herself and still retains an appearance of youthfulness and some of the good looks she had in her late teens to mid thirties. The smile is aided by partial dentures now, but otherwise it is still just as broad and genuine as it always was before my operation. I exude passion, exuberance, love and fun from every pore.
Yes, this is me, right here. Perhaps I’m getting on a bit (to some) but I’m still looking to be in pretty good condition. Obviously the bloom of my youthful beauty is long gone, but “quietly attractive” sits quite well with me.
And yes, I am that person. I enjoy the company of good friends and love to make people smile and laugh. To many people I am a likeable eccentric and I am proud of that distinction.
Here Is What You Don’t See:
You don’t see the tears that flow when a social situation leaves me looking like a fool because I don’t know how to handle it. You don’t see me rocking backwards and forwards in the corner of the sofa, screaming and crying because the entire day has proved to be too much, and I am experiencing sensory overload.
You don’t see the fear in my eyes, or the physical panic attack, when I’m confronted with numbers. I can never fully explain just how much numbers and mathematics terrify me.
You don’t see how somebody else has to plan my day for me so that I can get anything done.
I can’t explain to you how certain noises physically hurt me. Drills, roadworks, any sudden noises in the house… you will find me curled into a ball with my hands over my ears and my eyes squinched shut. Sometimes I’ll even growl, and when noises are hurting me it’s not a great idea to touch me without warning. I will flinch and scream louder.
You don’t see the anger, frustration and disappointment if I am prevented from doing whatever it is that I am currently fixated on. You don’t see how I tend to over-react if I put just one stitch wrong or can’t think of the word I want to use.
You don’t see me crying ugly tears for no reason, stimming, laughing uncontrollably or thinking I’ve seen something that isn’t there.
You don’t know about the nightmares that I have to endure. Real slasher movie stuff. Sometimes I am actually too afraid to sleep, because when I do I see blood and feel pain. Sometimes I twitch a lot in my sleep during these episodes; other times I wake up screaming or crying. D has to comfort me and monitor my behaviour every single night.
You don’t see any of this. Because I hide it well, in order to attempt to “fit in”.
There are some aspects of my autism that I embrace. The good stuff, after all, far outweighs the bad.
Having said that, I’m writing this because I need people to understand. Not just to understand me, but to understand autism in all of its many different forms.
I learn so much from you. About what autism is really like for you. Also about how you choose to reveal some of the hidden stuff – I have my own hidden stuff due to a different disability, and I’m finding ways to reveal some of it.
By the way, your youthful good looks haven’t faded. However old and wrinkly you may look in decades to come, I don’t buy the young=beautiful idea. It’s quite sexist in my opinion, and it’s just plain untrue. You haven’t met my beloved but she’s in her 60s, wrinkly and gorgeous.
Thank you – I’m happy to educate!
D is always telling me that I’m still attractive. I have actually never felt as physically and spiritually beautiful in my life as I do now, and I think D has a lot to do with that; he’s taught me to not only accept love but to love myself
Thank you for explaining what its like. I always mean to trite a journal entry about it but I’m afraid I won’t explain it right.
Honey, please use this blog post if you need to. The world needs to learn more about it xx
Thank you for sharing.
You are very welcome. Thank you for reading
Missus T! Thank you for sharing your deepest, most innermost thoughts and feelings. I know of autism, have been around autistic children, but not many adults–that I know of. But I still don’t know much about it, and your post was so well-written that it actually put me inside your skin. I had no idea that this is what autism was like. Is it the same for all autistic individuals? Perhaps not every specific symptom you mentioned, but the nightmares, the fear, the always on-edge? The nightmares in particular really grabbed me; I had no idea.
Thank you for being so courageous to put yourself out there and giving us all a more fuller understanding of autism.
Thankyou for sharing your experiences; they help so many. I identify with some of what you write, not jusst in my children but in me too. I struggle with certain noises and particularly being exposed to noise for a long time; it makes me irritated and unable to concentrate. Sometimes I can’t socialise when there is a background of noise; its just too overwhelming and I end up tired with a buzzing in my head. I don’t have a diagnosis of aspergers syndrome; well the diagnosis wasn’t around when I was younger. But now that I have autistic children I recognise some of my difficulties in them. I guess, like so many women, I’ve learnt to hide my difficulties. Deb
Reblogged this on Faith, Hope and Chocolate and commented:
“Sometimes my brain skips a beat” is definitely a good way to describe what happens when someone suffers an overload of a stressful situation, whether on the autism spectrum or not. A powerful and moving post.
I had to re-blog. I’m so thankful for your sharing what goes on in your life.
I’ve had the odd occasion where a stressful situation has caused repetitive behaviour – I used to have a spirograph, and one night this sort of time last year I spent an entire evening covering pieces of paper with the spirals, and that was really, really scary. I gave away the spirograph and have resorted to knitting and crochet ever since, because at least at the end of that I’ll have something of greater use to me or someone else. xxx
Thank you for sharing very personal observations about yourself in order to she’d some light on Autism. I am a mother of a 5-1/2 year old little boy with Autism who tries so hard and has the biggest smile but because he is only now becoming verbal he can now finally share with us his dislikes etc instead of us being detectives and sometimes just guessing. Looking forward to reading more.
Thank you for this post. It’s refreshingly beautiful and honest. I came across it via faithhopechoclate. My niece has sensory issues and it sounds a lot like some of the things you describe. Please keep sharing.
Thank you! I’ve known faithhopechocolate for some years now, and I hope to visit her in Whitby once I’m able!
It’s only very recently that I recieved my diagnosis of ASD (and I’m 39!) but I’ve always known. I do hope that my descriptions of living on the spectrum will help people to understand and/or not feel that they’re alone.
Thank you for sharing this with me. Thank you for visiting my blog, too… My diagnosis came from myself after my daughter was diagnosed and I started reading up on ASD more. 28 years old and my husband (my biggest cheerleader) and I decided that I don’t need the diagnosis. I know my limits and he’s helping me work on the social issues. We make a good team
It’s nice to see that so many of us have great supporting husband’s and partners to guide us through those harder times. I just wish his family could move past the diagnosis that I carry (Bipolar Disorder with psychotic features, nice eh?) and get to know the real me. We’ve been married for nearly 8 years and have two kids. They need to get to know me and not just the me they want to see.