Category Archives: Asperger’s and Autism

How to depress an autistic

“Were all on the autistic spectrum somewhere. I know exactly how you feel. You just need to try harder.”

Just no.

I try hard every single day. That’s why I’m constantly exhausted.

I’m not lazy. I’m autistic.

I don’t have the words right now. There’s an excellent Tony Attwood video going round at the moment. I hope lots of people watch it.

Anxiety is Boring

Anxiety. Anxiety. Anxiety. Anxiety.

I am somewhat annoyed with it at the moment. When I’m not merely stuck in frozen fear of… nothing, incapable of thinking thoughts that make any sense.

Blah.

Gah.

Blurgle.

Seriously, most of the time this is the best my brain can come up with. I’d do something mindful, but I can’t concentrate right now.

Today I was going to tackle a small part of the living room and move towards decluttering again. I’ve been working on my mental state so thinking it should be easier and now I feel too anxious to start, and too anxious because I’m not starting.

Insert manic laughter here.

Today I am doing nothing again. I can’t think which book to read next. I’m distracted by the messy piles – which one first? I’m distracted by my brain buzzing with nonsense.

I thought I’d update my book spreadsheet. That’s usually a calming exercise for me, but looking at the books on my Instagram feed and the thought of typing all those words…

Words. Words. Words.

(What do you read, my lord?)

… the thought of typing is so tiring. I’m typing this. Somehow freehand (freefall?) is easier.

I’m in the middle of The Wolf Wilder. I forgot. Maybe I can finish that. Maybe a bath will soothe me enough to get unstuck.

My real thoughts are more scattered than this. I am concentrating to get words out, so the focus is better.

Focus. Focus. Focus.

I used to be good at that. I used to be good at a lot of things.

Didn’t I?

At my counselling session she said I should make “I am a worthwhile human being” my mantra for the week. I’ve never had much self esteem, but when did it get so low?

Words.

Apparently writing this nonsense helps. I’m thinking. I’m focusing. I’m breathing.

Do I publish? It’s a random mess of nonsense.

Oh well, why not?

Executive Function

Trigger warning: depressed thoughts

I’m struggling with life at the moment. I’m sick of feeling depressed and anxious, and I want to make little achievements that I know will improve my life. But I can’t seem to work out how to do it.

It’s not that I don’t know the theory, I just have a huge mental block on action. I want to live in a tidier house. The mess depresses me so much. I don’t want a show home, or minimalism, or anything Instagram or Pinterest worthy (I Instagram my mess anyway, but I’m odd). I just want tidier. Less crap.

I’ve written lists. I’ve broken tasks into tiny bits. I’ve sketched room layouts. I’ve categorised the “stuff”. I’ve thrown everything on floor and surfaces into bags in the garage so there’s less to deal with in the house.

I’ve stared into space. I’ve read novels. I’ve taken up doodling. I’ve completed Plants vs Zombies. I have a level 7 town hall in Clash of Clans. I’m on level 170-something on Candy Crush Soda Saga. I sleep during the day. I cry. I rock.  I procrastinate. I perseverate.

I know I waste hours and hours but I’ve forgotten how to live. I feel like I’ve done it all so many times before that trying again is pointless. Life is pointless.

I’ll try again. Of course I will. I always will. I’ll look for my diary/planner and break the tasks up again. I’ll get there. I have to get there.

I wish I knew where there was.

Knotty

My life is full of knots. Actually, it’s full of nots.

Not blogging every day (because my thoughts bore me, let alone anyone else)

Not writing reviews (because I need to face the fear of getting it all wrong and just write)

Not tidying the house (because I put everything on the floor into sacks into garage weeks ago so I could concentrate on what’s left, and there’s still too much. And I still don’t know where to start. And I still can’t expect my children to be tidy when they’ve grown up in this state. And I don’t know how to do it. And I’m always so very very tired.)

Not walking (because getting washed and dressed seems like too much effort so I drop the children off with jogging trousers and a fleece over whatever I slept in, and eventually shower just before I collect them. Leaving the house for anything else is just too much.)

Not leaving the house (because I’ve not showered, and I have a mental block about going out without a shower, although I am now capable of dropping children off to school in the morning without one.)

Not eating properly (because cooking requires a set of complex skills that I can’t quite manage. Bread and pizza are just about do-able. As is chocolate.)

Not booking a doctor’s appointment (because then I’d have to book it, and get there on time.)

Not replying to emails (because I start to hyperventillate just starting to think about all the things I should be doing.)

Not reading (because I can’t think. But I’ve read two books this week, because I had to do something to start; to stop; to whatever I need to do.)

Not living (because I don’t know what I’m doing at the moment.)

Not.

Not.

Knots.

So I guess it will be upward from now. Because as soon as I manage to put things into words, it usually means things are improving. But I thought that before. And before.

And before.

I think I’ll go have a shower and try to wash out the knots.

Autism Assessment Report

adrc1

I re-read my assessment report today, after leaving it for six months. I still cry at some of it. It’s hard to read a sentence like “You offered limited indication of a sense of responsibility for your own actions that would be appropriate to your cognitive level and chronological age” without wanting to argue that it’s completely wrong and actually you’re a nice person who cares really.

That sentence is taken out of context, but it still hurts. I don’t like it.

The report from my assessment is 35 pages long. It lists all the different tests and measures that were used to back up my diagnosis, the evidence that they took from various places to back up my diagnosis, my results on various assessments, and a list of ‘habilitations’.

I love the word habilitation. I’d not heard it before the feedback meeting on my report, but apparently it comes from Hans Asperger. Where someone who has lost a skill needs rehabilitation to get it back (if possible), if you’ve never had a skill in the first place then it’s a habilitation.

Mine includes “difficulty with planning and problem solving in everyday situations if there is too much choice to handle”, and “managing in a new or strange situation”. The habilitations are common sense, and at this point in my life I know them. But there’s a difference between knowing something in theory and being able to put it into practice. I’m great at theory. Written exams are a doddle. I’ve failed the practical driving test ten times, after almost-perfect scores at the theory.

That’s just one example. The rest of my life is littered with them. I could probably write a book on organising and decluttering. You only need to look at my Instagram feed to know what a mess my house is in, and I have spent hundreds (thousands) of hours on it.

Theory and practice. In my life, there is a huge gulf between them.

I had to leave re-reading the report for six months because it’s been such a stressful time that I couldn’t cope with reading it again. I now mean to read it more thoroughly, and take more note of the habiliations and recommendations. There are so many things that I’ve been told I should do with my autism diagnosis.

I should apply for PIP. I should apply for a free bus pass.

Autism is a disability. I am autistic. I am disabled.

I find it difficult to relate my concept of me to my concept of a disability. But I normalise my life. All the accommodations and decisions I make so that I don’t break down do not mean that I’m functioning well. They mean that I have a lot of controls around me to get through each day.

I still don’t feel that I deserve any kind of disability benefit or freebies just because the world is built for people whose brain functions in a different way. Besides, look how far I got in life (before all the controls in the world wouldn’t work because pressure and stresses build until explosion is inevitable.)

And of course I’m not really autistic. Not like other autistics. Not really.

But when I feel like that I can look at that huge list of tests and measurements, and all the evidence in the report that says that I am autistic. Not Asperger’s. Autistic.

Maybe it’s time I stopped trying not to be.

 

Fractured

My mind is fractured, broken into so many pieces that I can’t quite fix. I used to be able to do so many things that I can’t seem to any more. I used to be functional, and now I feel so incapable of even simple tasks. Writing used to be a joy, now each word is a struggle.

I used to… I used to meal plan. I didn’t even know it was a ‘thing’. Going food shopping without a list seemed strange to me, and how do you know what to buy if you don’t know what you’re going to eat? So of course I planned, why would anyone not?

Now… Now I rely on children having cooked food at school, and Mr Chaos getting cooked meals with his work. Toast or cereal for breakfast, cheese sandwiches or pizza for dinner. So very bread-based. So very unhealthy. And even then I can’t cope, and it will be take aways. £20 a time two or four times a month, and we can’t afford that.

I used to… I used to budget. I had spreadsheets for every account. I kept track of what the bills were, how we could cut them, where we could make savings. I checked every outgoing against my receipts, and I always knew how much money I really had left in my account, even if it showed higher because something hadn’t gone through. I had savings.

Now… Now I look at my bank balance and it’s lower than I thought. I have no idea what I have or what I’ve spent. Mr Chaos looks after all the bills because we started getting late payment charges and I couldn’t keep on top of it any more. I owe my children thousands of pounds, because I keep borrowing from their savings. I have no savings. I have no income.

I used to… I used to work in a technical job. I could competently code in T-SQL and VBA. I thought up new ways to solve things with technology. I kept to numerous deadlines. I coped with daily changes in requirements. I wrote technical guides. I earned a fairly good salary.

Now… Now I can barely keep the two hours a week term time only admin job I have at school. I often postpone the day I come in to work because I can’t manage, fortunately it’s really flexible. The concept of full time work is unbearable. My annual ‘salary’ is about the same as I would earn in a week if I did my last job full time.

I used to… I used to…

I used to function.

Now I do not.

What changed? Coincidentally, it’s been worse since becoming a parent. Especially since the second child. But it’s not fair to blame them (and I don’t, I hate blame as a concept anyway) and actually, things started to fracture deeper before my eldest child was even conceived.

The lack of space with having children may have speeded up the process. I feel like I need months of recharge time to recover, and that’s never going to happen.

I could say that I wouldn’t know I was autistic if I hadn’t had children. That may be true.

But I think it’s the build up of a lifetime of trying to fit in a neurotypical world without knowing why you were different. With being told constantly that you are ‘normal’ but not knowing what that means. With feeling so useless – lazy, pathetic, manipulative, antisocial, spiteful – because you really could’t do things other people did, and you couldn’t control your reactions.

I seem to be in a period of autistic regression. Being diagnosed helps, but not enough. I am trying so hard every day, and achieving very little for the effort. I will keep trying, and little by little I know things will improve. But now, now is hard, and blogging has slipped so much.

I am trying, all the time. But I am fractured.

Adult Autism Assessment (UK)

I had a plan. I was going to write the process of going for autism assessment as an adult as it happened. This fell apart within the first month, when I received an extremely vague referral acceptance letter from the local service, which started a long process of anxiety and uncertainty.

From initial referral to diagnosis, my process took 14 months. This varies from county to county depending on waiting lists and local services. It will take at least three months, with an unknown upper limit. This is not particularly helpful.

Wherever you are in England (and possibly the UK, but the services vary and my experience is in England), the first step to getting an adult autism assessment from the NHS is to get a GP referral. Alternately, you can try a private route.

Book an appointment specifically for the purpose of talking about a referral, and prepare a statement in advance. If you have come to the point of looking to go through assessment, you have probably read a lot about the subject to suspect that you are on the autistic spectrum. The most useful thing to take to your GP is an example of how you think you fit the three areas of the ‘triad of impairments’. To be honest, I just waffled and didn’t prepare at all, but it would have been helpful.

The next step is to wait, and wait, and wait… Actually it was only two weeks since seeing my GP that I got a letter from the local autism service accepting the referral. If you have heard nothing with a month, you do need to chase.

The rest of the steps vary from county to county, and are very personal. It’s not possible for me to write about the process in detail because I am still processing much of it, and also I don’t actually want to share most of it because it it so personal.

However, here is a summary (with timescales) of the stages I went through:

Jan 2014 – GP referral

Feb 2014 – Referral acceptance letter

Aug 2014 – Pre-assessment letter, and form to complete

Sept 2014 – Pre-assessment interview in person (1 hour)

Oct 2014 – Pre-assessment questionnaires to complete (200+ questions)

Jan 2015 – Assessment day in person: 6.5 hours including  interview, lunch, tests, interviewing informant (in my case, husband)

Mar 2015 – Assessment feedback in person incl diagnosis if any (1 hour)

In between those dates were many, many e-mails chasing up what was happening, asking for clarifications, sending further information (including from a parent) etc.

In some guides I’ve read, it states that diagnosis will be given at the end of an assessment. With the service I was assessed with (ADRC Southampton), they have a meeting once all evidence is collected for a wider team to confirm whether the correct diagnosis has been made. They do not give any hints of any diagnosis until the assessment feedback session.

I won’t lie, it was a stressful process. The full-day assessment was especially draining, but the uncertainty and waiting caused me huge anxiety. It affected my entire household. There were  times I wished I’d never started but I’m glad I went through the process and have the diagnosis.

Blades of Grass

On one of the brief sunny days last week, I was walking to pick up my children from school and (as usual) looking down. As I look at the grass verges, I see the blades of grass nestle together. I see each individual blade: thinner blades, thicker blades; taller blades, shorter blades; patches of mud, a daisy here and there. It’s still a grass verge, and my brain certainly isn’t quick enough to count each blade of grass, but it’s also lots of individual parts making up a whole.

And I have no idea if I see what other people see. I don’t know whether someone else just sees a swathe of green with texture, or sees each blade, or sees the people walking towards them because they’re not looking down at grass verges as they walk.

I’ve not been blogging much for quite a while. I’ve been thinking too much. And being anxious. Being a lot of anxious. It makes concentration hard.

And now I’m trying to re-frame my life as being disabled. I’ve seen myself as useless, and needy, and pathetic, and incapable; but never disabled. It feels strange.

I am autistic.

I can’t quite get the words to come out without having to qualify it somehow.

Of course I’m not very autistic.

Of course it’s Asperger’s really, if that still existed as a diagnosis, not real autism…

15 months. One hour pre-assessment. 400+ questionnaire questions. Six hours observation, interviews and tests with clinical psychologist and neuropsychologist. Two hours interviewing my husband. 2500+ words of supporting information. Seven years of secondary school reports. 60+ questionnaire questions to my mother. 35 pages of feedback report.

“… would confirm a primary diagnosis of Autism Spectrum Disorder…”

I am autistic.

No Good With Change

I started writing a post for today just before school pick-up time. Having felt cold-y all day, I’d not achieved anything but I was starting to feel better and luckily for me, both children had after school playdates on the same day.

However, I still walked to school for pick-up time, to collect all the book bags and packed lunch bags and related paraphernalia, and because Mighty Girl (7) can be anxious and the person collecting wasn’t who she was expecting.

I thought it was the right thing to do to allay her fears.

I was wrong.

Seeing me, she clung to me and burst into tears and said she didn’t want to go.

She’s known her friend since she was 5 months old. They were at nursery together for four years. They’ve been at school together for over two years. She’s been to their house several times (admittedly with me there too) and the person collecting was someone from nursery who she also has known for most of her life.

But.

But she doesn’t get to go to their house often. But she’s not been to after school club at her old nursery for over two years and had forgotten the people there. But she was worried about people she didn’t know being in their house. But she was worried because she said she’d bring a game to play and she’d forgotten. But she wasn’t ready today.

Danger Girl (5) happily skipped off for her playdate without a backward glance or a wave goodbye, as I dropped all the bags in the mud of the car park to clutch Mighty Girl to me so she didn’t run off.

Short of forcibly dragging her into their car and letting her go screaming, there wasn’t any choice. She didn’t go.

She missed a playdate with a lovely family that we’ve known for over seven years but just don’t see enough of. She missed an afternoon with friends she doesn’t see enough of. She missed out.

Because I was there.

If I hadn’t got to school today, she would have had no choice and would have gone. And she would have been nervous but the nerves would have faded. And she would have had a wonderful time.

But I was there.

So she came home with me. And she cried. And I cried, for being a useless parent, and because I couldn’t hold it back. And she apologised for my crying being her fault, and I told her it wasn’t, and it wasn’t.

But the unexpected change threw me. I’d planned to finish the blog post, and hang up the laundry, and get the packed lunches ready for the next day, and have just those extra two hours of silence.

And I tried but I just felt miserable. I felt that everything had gone wrong because I didn’t get to do what I planned. I felt like shouting at my child just for her existence. I wanted to scream, and cry, and slash my arms with a sharp knife.

How pathetically melodramatic.

How pathetic.

So I stared into space, and cried, and reassured my daughter it wasn’t her fault. Of course it’s not her fault. And I booked a GP appointment online.

And she played quietly at my feet. And we coloured in pictures together. And it wasn’t perfect, and I did push her away more than I wanted to.

All because of a tiny change, and I’m not good with change.

What is feminine?

What is feminine? When I think of the word, certain things spring to mind. The phrase feminine wiles; make-up; shoes and bags; pink; lacy; glitter; high heels and smiles; fancy clothes; wine (never beer); dresses and skirts; demure and gentle; not obese.

Why do I think these things? The word ‘feminine’ has been used in certain contexts my whole life, making my mental definition of the word a collection of specific constructs. I am not alone, feminine is seen as a specific way of being.

But what is feminine really? Let’s go back to the dictionary definition:

fem·i·nine  adj.  1. Of or relating to women or girls. 2. Characterized by or possessing qualities generally attributed to a woman. 3. Effeminate; womanish. 4. Grammar Designating or belonging to the gender of words or grammatical forms that refer chiefly to females or to things classified as female.

The second definition of feminine seems to be what popular culture looks at: “Characterized by or possessing qualities generally attributed to a woman.” But why are certain things attributed only to women? And do they necessarily have to be attributed to all women?

I’m more interested in the first definition of feminine: “Of or relating to women or girls.” That’s it. It’s that simple. Feminine is “Of or relating to women or girls”. I and all my interests are feminine. My daughters are feminine. Every female and all their interests are feminine.

Why is this important? Relating as female and not seeing yourself as feminine can be a cause of low self esteem and depression. Discovering your own gender identity and sexuality can be hard enough, without being waylaid by unnecessary doubts. A boy who likes dolls is no more likely to be gay than a boy who likes cars is likely to be straight. Interests don’t define sexuality. Interests don’t define gender.

I was inspired to write this after reading this article in The Guardian with the subtitle “The rationale behind hating all things pink is that there’s something wrong with being a girl.” I have problems with that statement, but it all boils down to definitions of feminine and girly; of masculine and boyish.

Last week my daughters had a non-uniform day at school. Mighty-Girl (7 & 3/4) only feels comfortable wearing leggings and long sleeve tops. She wore her favourite Doctor Who top. As we arrived at school she became so anxious that people would make comments about her top that she was at the brink of hyperventilating. Danger Girl (5 & 1/2) loves super heroes and adored the Batman underwear I found for her. On the first day she wore them to school, they had gym and her friends pointed out she was wearing boy pants. She hasn’t wanted to wear them since.

My daughters interests vary, and many of their interests may be ‘traditionally girly‘, but all I can see is a world that pushes them into only liking ‘traditionally girly’ because any deviation leads to potential ridicule and bullying, to being outcast from their female peers and defined as tomboys.

Cynthia at Musings of an Aspie blog writes so much that makes sense to me. Her latest post on Autism and Gender again had me nodding along. I grew up thinking I ought to have been born a boy. Having no interest in ‘female interests‘. Preferring comfortable clothes and science fiction novels to dressy clothes and glossy magazines. Worrying that maybe I had excess testosterone and would never be able to have children.

I am not male, or masculine. My interests are feminine because I am female. I personally would have been saved from a lot of misery and self loathing if I’d realised that earlier than I did.

Feminine is “Of or relating to women or girls”.

It’s not pink.

It’s not clothes.

It’s not interests.

It’s not thoughts.

It’s not beliefs.

It’s daughters, sisters, mothers, aunts.

It’s fifty percent of the planet.

It’s anything.

This blog is, of course, my opinion and I welcome discussion. What do you define feminine as? What would you like feminine defined as? Thank-you for reading.