A gentle twist of perspective and a kinder acceptance of me from others and from myself.
That’s how I feel about the conclusion that I have an autistic spectrum condition – one that if I had been assessed for 2 years ago would have been called Asperger’s. I’m still going to call it Asperger’s and call myself an Aspie. Asperger’s is different from other autistic spectrum conditions in that there is no delay in language development in childhood. Because people with Asperger’s have no language problems, it can be harder to spot, and I’ll bet there are hundreds if not thousands of people living with it that are unaware and are putting their traits and behaviours down to other problems or conditions.
The dust is finally settling here. It’s been a rather swift arrival at a new and different sense of self from that first decision to seek diagnosis in February, through all the reading and email queries I sent in March and the appointment and conclusion in April. It’s such a short space of time to be switching your thinking about yourself so drastically that it’s been dominating my life. It’s been a whumping great deviation from the me I thought I was three months ago to the me I’m just getting to know and love a little bit more now. But just knowing for myself that an autistic spectrum condition was very, very likely didn’t give me enough of a feeling of the affirmation I needed. I, personally, needed more relief from elsewhere – exoneration perhaps? Something that would be a metaphorical and literal document I could wave at people and give the whole process a seal of approval. Although I accept that others say just knowing for themselves is enough, I don’t understand it. For me this is as much about other people as it is about me. Why should I pretend? Why should I give the wrong impression? Why should I be dishonest about my feelings? I need other people to know about this and think about this and realise how difficult life has been for me. I want everyone to know that I get sensory overloads, how I can’t cope with situations I can’t control, how I need a bit of extra TLC sometimes. How I simply am different, and how fitting the neuro-typical world is very bloody hard work on a regular basis for me. At the moment while I am still processing everything, I am pretty much totally wrapped up in the whole thing and feel like slapping bright paint all over my body and running around naked so people can see just how different and out-of-the-ordinary I really feel.
“Normality” and expectation do still take up a great big chunk of my life though, as I find myself getting on with all that is needed to make a home tick along. It took a week (and a mini-meltdown) before I allowed myself the indulgence of sitting quietly and reading my report through properly and giving me the me-ness I need to carry on.
To the untrained eye I may not look any different and I may not behave any differently from they way I was 3 months ago. Why should I? Why would I? But, actually, already, I am: I’m standing taller, I’m holding myself differently, I’ve swept my hair from my face and I’ve lost a little weight. I’ve stopped pigging out, and I’m beginning to stop hating myself. I’m smiling more. I’m being nicer to my husband, and I feel we’re getting on better than ever. We’re having conversations about what it’s like to be me and I feel that that’s okay and he’s not annoyed or irritated by it (not every time anyway). And it’s not all negative anymore. It’s not only a string of problems anymore. It’s about how I’m different and there’s no point pretending otherwise. I feel calmer and less angry. I can actually see how I might just be a little bit lovable and I don’t feel so insecure about Richard’s feelings towards me.
The changes in my thought processes and my patience are marked too. But only to me. Despite appearances this is massive. It’s rearranged my whole history, my whole way of looking at life and given me a “now” – a “here and now” that I didn’t have before. This time is good. This age is good. I’ve been waiting all my life for an age and a time that suited me – I’ve always felt out-of-place and now I feel in place. The myriad of little tweaks Richard and I have had to make in the last couple of weeks to the way we look at me have answered and explained everything. All the knots are going and everything is gradually smoothing out. It’s like I was all at sea before and now I’m sailing. It’s all at once both the same life but a totally different one too. And I know that makes sense! It just does.
The girl who was too quiet, fidgety and reluctant to join in and who slowly dropped out of education has been reformed as the girl who did well to cope considering what she was dealing with and how difficult it was to concentrate in a classroom situation, and who should have had more support and understanding.
The unsettled, emotional young woman who failed to hold down a job for any length of time, and who was never satisfied with anything has been reformed as the perfectionist, Aspie woman who fought bravely against her instincts to run away and hide for years and who deserves a pat on the back for keeping on keeping on for so long – but who should have had more support and understanding.
You can’t get support and understanding for nothing though. How can you get other people to support and understand what you don’t understand yourself? Life was all about fears that I knew I shouldn’t have had and I never talked about my difficulties – they were too weird, too not normal, too untypical. I could see how other people seemed to enjoy doing things I hated, and endured things I couldn’t even contemplate, and I couldn’t see around, through or over that. I just kept schtum. I have been held captive in a solitary cell for years where the bars were made of “normal” and “social expectation” and “guilt” and “what does everybody want from me?” And I never knew the only key to open the lock was understanding.
For years a favourite song of mine has been I Wish I Knew How It Would Feel To Be Free sung by Nina Simone. I will play it and twirl around the kitchen with tears in my eyes. I’ve always felt trapped, and known I had an inner me and an inner strength that didn’t know where to go or how to show itself. But trapped by what? I didn’t know. I tried to guess. I made things up. I think now I felt trapped by what I didn’t know and what I couldn’t share. This line in the song always stood out for me, but now more so than ever: “I wish you could know what it means to be me.” No one can ever know what it means to be me, but some books written by fellow aspie women have come pretty close, and that soaring feeling of finally getting somewhere makes me just want to cry all over again.
I took the first steps by being honest in my writing about five years ago. It was like the old cliché of opening a vein onto the page. Once I started, thoughts and feelings came flooding out that even I didn’t know I held. From that honesty and new perspective came questions:
Why did I feel this way, behave this way, want a different life from so many others?
That honesty – and the bravery it took, and the support from people who read my writing and didn’t mind about my foibles – or who seemed to like me for them anyway was good but not good enough. It’s great that people can say ‘I know you’re shitty sometimes but I love you all the same.’ But what if I don’t feel I’m being shitty. What if I don’t believe I am shitty? What if I’m not being shitty? What if it’s because I’m speaking a slightly different language from a slightly different perspective and actually there’s not a thread of shitty in my intent. I’d rather people could stop seeing me as likeable shitty but instead as someone with autism who is having a meltdown or a crisis in communication. I’d rather people took the time to understand that autism can sometimes mean feeling shitty looks like being shitty, but it’s not the same. It’s really not the same.
And it’s great for online friends to say it doesn’t matter that I’m unsociable. But what about the people offline? That shortage of social interaction face-to-face can really cause other people problems. But what if I’m actually not unsociable at all? What if I’m burnt out, struggling, exhausted, dying for some time out. I’d rather people saw me as a woman with Asperger’s who has to battle anxiety beyond anything anyone else can imagine on a minute-by-minute basis and see how I need extra care, extra time and an understanding of my silences. Just not answering someone is weird and potentially rude, but just not having the words or the energy is different. It’s okay to be me but even more okayer to see me through the perspective of autism and let people see it’s not what they thought.
My point is I wasn’t good enough for me without Asperger’s as an explanation. I give off an aura of something I’m not. I hate how I don’t cope and I hate all the horrid physical symptoms that being anxious give me. Now I know what tools I am and am not armed with, I know I am coping better than I thought and I always was. It was just that I was trying to drink lemonade when my body is designed to drink chamomile tea.
So now I know I’m okay and I need other people to know I’m okay. And not just okay in the Old Rachel sense of the word but okay in the New Rachel sense of the word. New Rachel has something to tell you: She has Asperger’s Syndrome, AKA autism. It wears her out. If she’s being seemingly normal around you, then you can bet your bottom dollar she is making a non-stop huge effort and that after you’ve seen her she will be exhausted and crave solitude and quiet. If any situation goes on for too long she may need to escape or there’s a chance she’ll blow, behave weirdly or simply stop talking. Rachel doesn’t crave the company of people or social situations like other people do but she can enjoy controlled situations in short bursts – especially with people she can be herself around. She likes her home and her husband and her children, her dog and her garden and her peace. Rachel loves other people, thinks about and worries about everyone regularly. She is genuinely interested in other people and finding someone she has something in common with makes her super happy. She has a deep interest in society and human behaviour and wishes the whole world would be nicer to each other but she realises now she has to be nice to herself first in order to survive.
Rachel can’t stand something going on around her when she is trying to think. It feels like it stops the pathways in her brain from working. She needs to shut everything out in order to be creative. Rachel feels she must be creative regularly to feel whole.
Now that you know it is Asperger’s and not depression or rudeness or laziness or a bad attitude or hostility perhaps you can see why she needed this assessment and understanding and how it is helping her.
I don’t need anyone looking after me. I’m a coper, I’m a determined, bloody-minded fighter – and I now know a bit more about the extent of that fighting. But I do need care and I do need the right to go ahead and be an autistic person. Because that is what I am. And now I’ve got that right.
Not doing “normal” very well knocked my confidence and my self-esteem. As my school life worsened and I graduated into adulthood unprepared, I slowly lost the belief that I was as clever or as capable as some of my peers. I began to feel that no one else believed in me either. When you are young, thinking that no one believes in you can stop you chasing your dreams. The psychologist wrote on my report that my problems increased when social demands increased and that I underestimate my achievements. Understanding the connection between my life experiences and the difficulties imposed by my condition makes everything make sense. I understand how my sensory problems and anxiety have altered my sense of self because of the way I experience the world. One of the first things the autism assessment did for me was put to bed any doubts about my intelligence. I scored on the 98th percentile for IQ and for verbal comprehension, and the 92nd percentile for perceptual reasoning. When the psychologist told me I was in the top 2% for intelligence I assumed I’d misheard her.
I wasn’t entirely sure what I wanted to read in my report. Once I’d got the verbal conclusion from the psychologist on the day of my assessment I didn’t know what to expect in the post, but what I got was like a great big hug: There was the acknowledgement that what I’d been experiencing all my life was difficult and traumatic and a suggestion that my better understanding of it would help to reduce stress but there was also a recognition of my exhaustion, my achievements (it’s nice to see them written down by someone else!), and, better yet, there it was in black and white: “Through assessment and subsequent reading on the subject, Rachel will be able to obtain a clearer understanding about the nature of her anxieties. This means there is an opportunity for Rachel to accept some areas that she finds just too difficult (and not have to feel guilty about it).”
There. That’s what I wanted. I need to stop feeling guilty.
The psychologist concluded my report with words that made me cry:
“Rachel has shown great internal strength and resilience to have achieved so much already. I’m sure that with the greater understanding she has about Autism Spectrum difficulties and sensory difficulties, she will be able to decide on what other areas of life that she would like to tackle.”
For now I’m just concentrating on getting to know the new me and looking at everything I do and feel in a new way. And giving myself permission to be alone because it’s okay to and I’m supposed to.
Along with all this I’d rather people knew why. I’d rather people understood, and I’d like Richard to be armed with the knowledge to explain on my behalf if ever he needs to. Because just acting weirdly or differently leaves people to fill in the blanks with the wrong information and that can hurt.
The psychologist hoped I had found the process a positive experience. I can honestly say I can’t think of anything else I’ve done in the last few years that has been this positive. Talking to someone who is neither friend nor family who was simply there to gather information meant Richard and I could both talk honestly about things we didn’t perhaps feel comfortable telling other people. It also meant that, as someone official with years of experience working with people with autism, the psychologist made the whole thing real and something to be taken seriously – because no matter how much people claim to know you and understand you, unless they have autism themselves they don’t “get” it. How can they? I think it helped Richard to take the whole thing about me more seriously, and I really hope it means he respects and admires just what it’s taken for me to come this far.
Never underestimate the power of a woman with autism. And never underestimate the power of an autism assessment.