As the mother of an adult daughter on the spectrum, I was drawn to this memoir as a way to better understand some of the ASD struggles my daughter encounters. I recognized her so much in this book. Obviously not everything - as the old saying goes, 'if you've met one person with autism, then you've met one person with autism'. It's not like people on the spectrum are identical but there are commonalities, of course. The sensory/interoception issues are a big one for my daughter and a big one for this author.
The parts of the memoir that focus more on the author's job and on the author's obsession with Brexit were rather dull for me. I she'd written more about parenting and how her autism impacted those relationships. On the whole though, a solid memoir that read very easily.
I highlighted about a bazillion parts on my Kindle:
The good feelings can be as overwhelming as the bad. They are just as big.
I can't name my feelings. I don't recognize them. Don't know what they look like. I know all the words that describe them, of course.
No one uses the word neutral when it comes to emotions, but that's how I want to live. I want to experience life in neutral. Not feeling anything much. For me, the absence of sensation is better than experiencing anything too jarring, too unexpected, too new. I want to move through life with no sudden movements. Sameness is my anchor. I want each day to unfold quietly and predictably.
All I want to do is quash the fear that envelops me and takes over my mind at times. If I can just achieve neutral more often and learn to do the things that come easily to others, then I think I may finally be content.
The world is an alien place to me. One full of dangers. I need to make sure they don't catch me out. I am aware of my fragility. Does everyone feel this? I'm not sure. If they do, how do they live with those feelings? I need something to distract me.
I try hard to observe others, to notice how they behave. If I don't do this, most people-even those to whom I am closest-can become blurred outlines in my head. And when I am not with someone, I struggle to form a mental picture of them-even Tim or the children. If I don't focus on people, they fall into the background of my world.
My experience of the world is at odds with how most other people see it. As Morticia Addams once said, "What is normal for the spider is chaos for the fly."
"I don't know which bits of my personality are down to the autism and which bits are inherently me." "Why does it matter?" "I don't know," | reply. "But for some reason it really does."
I reel off facts. "Did you know 87 percent of people with an autism diagnosis are unemployed? Or that 42 percent of autistic women have been misdiagnosed. Can you believe that the vast majority of research has only looked at boys?
This is a classic autistic info dump. I have all these thoughts in my head and I have to get them out. Even if my listeners are so bored they are contemplating throwing themselves off a cliff to get away from my incessant chatter. I simply cannot stop.
I want to ask whether he would be OK living with the kind of fear I feel much of the time. I want to know how he would feel if he were incapable of feeding himself three meals a day. I want to know how he would cope with not knowing what emotion he was experiencing. I want to know what it would be like if it took him hours to psyche himself up to do something as simple as run a bath. How he would cope when inertia sets in and whole days can be lost sitting on the sofa trying -and failing-to make a slice of toast with butter.
I live with an all-pervading fear of the future. Of what the next five minutes hold. The next five hours, five days, five years.
I'm not afraid of flying in the usual sense. I don't fear a crash. I don't worry the plane will burst into flames or disappear from the radar never to be seen again. I'm afraid of myself. Feeling different is so intense that I worry what it might do to me.
Temple Grandin wrote "Fear is the main emotion in autism." That is certainly true for me. Everything new | encounter-even if it is simply the beginning of another week- is seen through the prism of fear.
I enjoy reading a book much more the second time around. A first read can be filled with apprehension. What if I don't like the way the story goes? A second read is a joy. I know exactly what is going to happen, so I can immerse myself in the words and the subtleties in a way that would have been too stressful the first time.
Childhood is often a hugely difficult time for autistic people. The rules can be confusing and make little sense.
In terms of how autistic girls react, I think one of the common ways is to observe, analyze, and imitate and create a mask, which delays diagnosis for decades until the wheels fall off. The girl will say, I don't get it. I don't understand it, but I will observe it. I will look for patterns....This often means that a teacher, for example, doesn't see the problem because often the girl is a goody-two-shoes at school. Still, she may escape into her imagination, so she is diagnosed with attention-deficit disorder.
It's often more of an issue in the secondary school years, when socializing is more complicated.Girls can be more bitchy and mean, and Aspie girls don't play that game. They are loyal, trustworthy, and kind. They just don't do bitchiness, and they find it very hard to understand why girls would actually enjoy being so cruel to each other and so destructive. The other thing is girls are often expected to be touchy-feely, affectionate, very much engaged in talking about feelings and things like that.So there is a higher expectation of social engagement and empathy. These expectations can be difficult for girls with ASD.
I would create imaginary worlds in my head and would sit still for hours coming up with the rules for this parallel universe. In this new world in my head, mealtimes were optional. Everyone would wear the same clothes every day, and they would be made from soft fabric that felt good against the skin, not itchy, scratchy, or harsh. No one shouted or raised their voices. If you ever broke a rule, a grownup explained why it was a rule and why it mattered, and then you were simply told kindly not to do it again.
My life is full of paper that seems to multiply on a daily basis. I cannot tame the flow. I don't know how to keep on top of it. Am I supposed to keep my electricity bills, and if I am, for how long? Is it really necessary to keep paid parking fines from 1996?
I didn't enjoy playtime because I didn't know what to do.
As a child I would see everything. If I looked at a lawn, it was as if I could see every blade of grass. It was too much. Too overwhelming. I learned to blur my eyes, so everything became softer. So I didn't have to process so much information.
I like food you can crunch. Like potato chips and carrots and french fries. Soft food tastes so horrible it actually makes me feel sick.
I hate uncertainty of any kind. I like to know exactly what is going on in my world and what will happen next.
Mostly I want to do nothing, to make no decisions, to just sit here.
If a place was in some way making me feel bad, I wouldn't say anything. I would find a reason to leave, or I would suffer in silence.The consequence would be that the experience, whatever it was, would be diminished. I wouldn't be able to concentrate, only able to think about getting out as quickly as possible.
I want to learn how to do all the normal things people do, like manage their money, remember to eat, have friends, be organized. I want to know what | like and what I don't. I want to stop being so confused by the world. I want it all to be easier."
I'm struck by the sheer number of feelings shown. I just don't feel any of them. Apart from fear. What does responsive feel like? Valued? Or insignificant?
Tony Attwood believes autism and a degree of anxiety are, sadly, common bedfellows. "I'm trying to seriously think if I've met someone with Asperger's for whom anxiety was not an issue," he tells me."It's hard to find one. He believes anxiety in those with autism may also be influenced by an altered interpretation of physical sensations.There is a strong association between autism and anxiety. It particularly seems to be physical anxiety. Some of that may be to do with awareness of internal bodily sensations and bodily focus. It's called interoception. There is a mismatch between the subjective experience of their own internal bodily sensations and how accurate they are at interpreting them.
I was always on the edge, always getting it slightly wrong, never quite feeling part of things. I was on the outside looking in on these female friendship groups. I didn't have that one special friend the others seemed to. I drifted in and out. I wasn't hated, but I wasn't loved.
I don't cope well with the emotions of others. I would like to live in a world where we all went along on a straight emotional line, never feeling anything too strongly. I don't do drama. I can't have a screaming row. It feels wrong and destabilizing. I can't even defend myself if I am wrongly accused. I will do anything to keep things quiet and stable.
My therapist asked me questions about food. She said I have "issues" with it. I told her I didn't, I just liked the food I liked and didn't like the rest.
When I am anxious, I cannot eat. It is as if my throat constricts and I cannot easily swallow.
"What do you feel if I surprise you with a new gray sweater?
And God help me if it's not gray."
"It makes me feel overwhelmed," | say. "I think it's because I haven't had time to accommodate the idea of this particular sweater into my life. It's different when I buy it myself because in the shop, I will have considered how it will with my other gray sweaters."
I am a prisoner to my routines. Why can't I be like normal people and go to the coffee shop at different times? It has to be this way, otherwise I cannot get on with the rest of my day.
It takes a while to accommodate anything new into my life, and it's better if it slowly finds its way in.
When something new happens, it knocks me off balance.
I can accept change when it happens incrementally. In baby steps. I can accommodate new situations if they change bit by bit.
I list the things most people don't even have to think of. I schedule baths, food, and breaks to go out-side. I write down calls I would like to make or messages I would like to send. I limit my time online and mainly look at things that are nurturing.
(Interviewing a successful autistic woman)She told me about the multiple systems she has in place, because she knows that if she doesn't write things down, she will forget. She has a diary, a weekly planner, and an online calendar. She explained how to delegate to the future. She told me, "I sit down and think, Does this actually need to be done this week? If the answer is no, the act of writing it somewhere else-a week or a month ahead -gets rid of it so it is gone and it doesn't bother me anymore."
One area where I need help is with executive function, which in me is sorely lacking. I find it difficult to structure my day and impossible to plan tasks or to estimate how long something will take to finish. I find it difficult to organize myself.
one of the reasons I struggle so hard to deal with change that happens or to bring about change is because I lack the ability to imagine what life would be like if it were different.
One of the gifts of being on the spectrum is that the connections you can make are totally different. When you look at it from this perspective, you can start seeing autism as an advantage, because we need people to think differently; otherwise we'll never make any evolutionary leaps. Sometimes people on the spectrum can think so far outside the box that it's really important.
I briefly had a best friend, Helen, it didn't work out. She was too needy for me. I felt subsumed by her, drowned out and confused by the intensity of what she wanted from me. I needed much more alone time than is usual for a teenage girl.
Where was the time for me to daydream, to think, to read, and to be alone? When could I just be me? I like set routines, but I need to be in control of them.
Autistic special interests are often also a net. Being able to escape into something we love protects us from the harsh and confusing outside world. In girls, these interests are often not that different from those of their peers.
I don't like books where people suffer in a realistic way, or where there are real-world problems that have no understandable solution. I need to know that all will work out OK in the end.
What I find in girls with autism-in comparison to boys - is that they are much more intelligent and creative in trying to resolve the challenges they face.
Girls can sometimes make friends but not keep them, because of the intensity problem: either she hardly ever contacts her friend or she sends her twenty texts a day, and when the friendship ends, she feels betrayed and can be very black and white in her thinking. The other side of the coin is when someone seems too intense to the girl with autism. This is why I see autism almost splitting into two groups. There's the extrovert intense, what I call the Italian drivers. They don't read the signals, and they get upset because it's not working. And there are the introverted, with-drawn, shy types. In other words, it's either the person choosing solitude and being alone, or being highly motivated to socialize, but very upset when it doesn't work.
Neurotypical people have to stop projecting their concepts of happiness are onto the autistic population because autistic happiness is not the same.
I am a cat, judging myself by dog behavior.
My autism means I struggle to imagine a future -any future-but what choice do I have? The future is going to happen one way or another. I can't live a Groundhog Day life. I must take courage and move on.