Am I Autistic? Take Two

I don't like lying.

With this in mind, I'm sorry if I have deceived you.

I wrote a blog post titled Am I Autistic? over six months ago.  My conclusion was I exhibited a lot of ASD traits/behaviours but no, I absolutely was not actually autistic.

Huh.

It seems I may have thought I wasn't autistic but others - specifically my parents and Wolf - are of a differing opinion.  Not necessarily at the time of me writing the blog post but certainly more recently.  We had a conversation about ASD a few weeks back (a pretty regular occurrence in this household) and it came up.  Since then, I have read up a bit more on females with Asperger's and have even taken a pretty good online test...with the conclusion I probably am autistic.

Wolf said he thought I knew.  I didn't.  I knew they joked about it but I didn't realise they were serious.  Not that it's in any way autistic to not get when someone's joking...or anything...

I've started to assess my behaviour in the way I do with Tyger and it's a little disconcerting.

There are certain things it seems I do - and probably have done for years - that I was totally oblivious to.  Apparently, I violently rub my face when stressed.  I also bite my thumbs (not like some Shakespearean character trying to insult someone in a rival family but biting down on the knuckle absent-mindedly).

Like this.  Huh, looks like my teeth are off-centre...never noticed that before.

Having asked my parents what my most obviously autistic traits are they've said I'm obsessive, like routine and have always been a bit of a loner (and the close friends I have had have generally probably not been neurotypical themselves...and at least one of them reads this blog so...umm...not you, obviously...).

I don't know what they're talking about.  It's not like, when I was a teenager, I used to read through my Friends books listening to my Friends CD with my Friends poster staring down at me and test myself on my Friends knowledge using my Friends daily calendar in between each episode of Friends...when I'd always make sure I had a mug of milk (Friends mug, of course) on my Friends coaster with the same number of biscuits in plenty of time so I could always clap along with the theme tune...on a Friday night...at home...with my family.  An obsessive, routine-driven loner!  Pfft.


This week I went to the first session of the 'EarlyBird' programme (a course for parents of young children with ASD).  What better place to start analysing myself for autism than on a course all about autism with a load of parents of autistic children?

First clue was how anxious I was about going.  New place, new people, not knowing what to expect - it's a lot to stress about and stress I did.  Queasiness and pressure on my head and face (somewhere between numbness and feeling like they were being squashed) seem to be pretty reliable signs of my anxiety.

Actually, Wolf has said I'm at my most autistic (he probably worded it differently, to be fair) when preparing to go somewhere new for a specific time.  I'm not sure exactly what I do!

Once there, I coped pretty well with going in (desperately trying to remember the direction from which I entered the building so I'd know which way to go at the end because I could get lost in a phone box) and meeting everyone.

I did almost have to leave the country and live as a hermit forever more after declaring the big hot water flask for tea and coffee was empty only to find out it needs pumping.  I valiantly stayed and didn't even curl up into a ball in the corner!

So, we began.

The room where the course is held has those horrid tube lights.

I have problems with light.  There are days when it's not hugely bright out but I find myself squinting and struggling to look up at all (not at the sun but just up near the sky), whilst everyone else is unaffected.  That's nothing compared to my problems with artificial lights, though, and certain colours of bulb that make everything seem either really saturated or unsaturated and I can't focus on anything properly.  It comes up in my dreams a lot and I spend a lot of my time feeling like I've suddenly gone from darkness to bright light and my eyes haven't adjusted yet and those lights didn't help.

There was constant noise, too: rain drumming on the roof, a video playing in the next room, people in the reception area.  It made it hugely difficult for me to focus on the video we had to watch.

And I noticed myself doing...things.

People with autism often have a problem with 'proprioception', which is your ability to know where your body and limbs are in space without having to look.  Sounds ridiculous, right?  How can you not know that?  That's what I thought until I realised at this course that I totally have problems with it.  I was sat there struggling with the lights and the sound and realised I was doing all these little things to keep me 'grounded'.  I was constantly rubbing my toes together, I had my legs crossed and was pressing the top leg into the bottom one really hard.  And I was constantly pinching myself, digging my finger nails into my hand, pushing my fingers together or stretching them really far apart.

What happened if I made myself stop doing all these things?  I really did feel like my body was floating, like I couldn't really feel my limbs without concentrating really hard on them and on the feel of the fabric of my clothes touching them.

I sat there listening to people talking about the sensory issues people on the spectrum have and they were talking about me.

Not that anyone would have known to look at me: they couldn't see inside my shoes at what I was doing with my toes, couldn't tell how hard I was pressing on one leg with the other, and it's easy to push your thumb nail into your hand so nobody can see.

See, just normal hands with fingers interlocked.
Except, I'm pressing the nail of that bottom thumb in my finger.

It was thought ASD was far more prevalent in boys than girls.  However, the more we understand about autism the more evidence suggests girls actually present in a very different way and tend to be very good at 'masking' their ASD.  When it comes to supposedly 'higher functioning' ASD, these girls' autism goes completely unnoticed until they reach puberty and then the combination of physical and emotional changes, the increased social pressure and the greater academic demands suddenly all combine to completely overwhelm them and that's the point at which - if they're lucky - they might get a diagnosis.

If I have ASD I have always been very good at masking it.  I have been so good at masking my autism, in fact, I've hidden it from myself.

What now?  What am I going to do with this information?

I don't think I'll try to get a diagnosis.  Not right now, anyway.  I will need to start pushing to get Bear diagnosed soon and I don't think I can cope with both.

What I will do is cut myself some slack.

I have always thought I was a terrible friend because I find it really hard to reply to messages or initiate contact or meet up.  I agonise over every 'hi, how are you' and response.  I start messages and never finish them because it's just too much.  Knowing there's a good chance I have a disorder that predominantly affects social interaction and communication makes me feel a little less guilty.

I'm not an uncaring friend; I'm autistic.

I have always suspected I'm a bad parent because at times I know I should be playing with the cubs and instead I am sat on my laptop.  I think actually my ASD means I get so overloaded by the boys' constant noise (which is part of their ASD) that I retreat and the only thing that stops me breaking down and crying in the bathroom is focusing on my laptop for a while.

I'm not an indifferent mum; I'm autistic.

I always thought I was useless because I don't do things I know I need to do like sorting out various insurance or phoning the hospital about something.  I knew I was physically and intellectually capable so didn't understand why I just couldn't bring myself to do these things until well after the point where they needed to be done.  Now, I understand my problems with executive functioning and anxiety - both elements of ASD - are probably to blame.

I'm not lazy; I'm autistic.

Knowing I'm probably autistic is enough at the moment.  It's a relief just knowing why I am the way I am.

Linked with:

Tyger the Tiger is Being Referred

It's been several months since Tyger had his initial visit from the health visitors who employed the tried and tested 'wait and see' approach to his suspected ASD.  We had a second visit from a different health visitor a couple of weeks ago.

She was nice but almost immediately made the rookie mistake of assuring me Tyger made 'really good eye contact'.  This comes up time and time again when talking about ASD and it's such an outdated thing to focus on.  Whilst a child avoiding eye contact is certainly something to take note of, it's just one of many many traits and behaviours that could indicate ASD but certainly doesn't need to be present for a diagnosis of ASD (lots of autistic people make eye contact perfectly well).

I guess it's the same with anything people start to become aware of and talk about.  If you're actually pretty knowledgeable on the subject, you notice the misinformation or incomplete information everywhere (you know, like when you hear someone discussing Jon Snow's parentage and they don't even know about the L+R=J theory?...anyone?...no?).  I saw a thread on a parenting forum yesterday about a lady who sounded potentially autistic to me.  However, another poster assured me she couldn't possibly be autistic because she had a habit of massively overstaying her welcome and autistic people hate being in social situations so wouldn't do that.  This reminded me of when my mum initially took my ASD sister to the GP the doctor said, 'The good news is it's unlikely to be autism because she wants to have friends.'  This whole 'autistic people hate being around other people' myth is pretty pervasive but it is a myth.  It's true that the mishandling of social situations is a big part of ASD but an inappropriate social response/understanding isn't the same as hating all other people!  Of course you do get the stereotypical autistic person who just doesn't like spending time with others and prefers to spend all day every day on their obsession but you also get the ones who desperately want to spend time with others but find social situations hugely stressful, the ones who enjoy being around other people but possibly don't realise they're being inappropriate or hogging the conversation, the ones who find one person they like and just want to spend all day with that person.  It varies greatly as each one is different - almost like they're, you know, people!

Now, Tyger loves people.  He loves talking to people.  He loves saying 'hi' to people in the street...every single one of them, regardless of whether they say hi back or look at him or acknowledge him in any way.  He loves it when delivery men come to the door and will invite them in ('come in, come in!').  He loves talking to people in the doctor's waiting room and will make instant friends with some unfortunate little old lady who he'll then demand stands up and goes with him to the children's books in the corner.  He loves it when one of my sisters has a friend round and will immediately attach himself to the poor unsuspecting teenager and cry when they disappear to my sister's bedroom.  He loves people.  Except when he doesn't but that's probably another blog post.

The health visitor seemed taken aback by his forwardness and bemused by his responses to her attempts to engage him in putting puzzle pieces into the right slots.  My mum - who has extensive knowledge and experience with young children - said toddlers tend to fall into two groups when they meet a strange adult.  They are either shy and unwilling to engage or confident and eager to please (which isn't to say either group won't end up cheeky/chatty/difficult etc. given a little time to get to know the adult).  Tyger is confident and friendly...but also knows his own mind and will freely tell it to anyone and everyone.  The health visitor asked him to put one puzzle piece in the right place so he did, whilst chatting away.  She asked him to put the next one in place and he told her 'no' and started playing with the piece (it was a car) despite all her encouragement .  She asked him to point out an animal in a book and he did.  Then next time he indignantly told her it was her turn and refused to co-operate.

I don't think she knew how to take him.  I'm not sure she was convinced he has ASD but she's referring him to a child psychiatrist anyway so it doesn't really matter.  The appointment will probably take months to come through but that's fine.  He doesn't particularly need a diagnosis right now since he spends all day every day with me and I already know about his needs but since it can take years in some cases, I'd rather start the whole process now before he's at school and might actually need the support a diagnosis would give.

Not that I always find it easy to support his needs.  For instance, Tyger has sensory issues and one of the ways this impacts on him is he doesn't like wearing clothes.  In particular, he doesn't like wearing jeans.  I think the restrictive nature of them and the waistband are uncomfortable for him.  I'd let him run around naked all day if I could.  I like to think I'm a pretty liberal parent and nudity isn't a big deal - or it wouldn't be if Tyger could leave...himself alone.  I know, I know, it's totally normal and natural for kids to do some 'fiddling' and the like.  As I said, I'm open minded.  However, Tyger will play with his penis until it's red and inflamed.  He also started trying to put various things up his bottom.  Now, I know he's my first but I'm pretty sure the 'let them explore their bodies' attitude only applies so long as you don't think doing so will lead to a trip to the GP (which it did) or possibly A&E.

So, for now at least, clothes are a must.  But the fight of trying to get them on him in the morning and back on him after every toilet visit was tiring and he also learnt if he claimed he needed the potty he could take his trousers and pants off then run away (we're in the UK so 'pants' are always underpants, not trousers).  I tried jogging bottoms instead of jeans but whilst Baby Bear can only wear jogging bottoms because jeans are too tight to get over his huge thighs, Tyger is too skinny for jogging bottoms and they just fall down (the drawstrings on his age range seem to be decorative only and aren't functional - I can only assume this is due to fear of strangulation, which is probably also why you can't get mittens on a string anymore now I think of it).  Dungarees caused more problems than they solved because he got very stressed out by the buttons.

He doesn't mind his onesies at night, though, and often asks to wear them instead of clothes so I had an idea.  I didn't really want him wearing the ones he has for night during the day - partly because they're quite thin and since he also refuses to wear socks he'd likely be cold and partly because I want a distinction between what he wears in the day and the night to help with a sleep association.  I had a look on Amazon and eBay (I'm sure there are other places to purchase things but their existance has slowly faded from my memory) and found a fluffy tiger onesie.  The fabric was similar to a Frozen blanket Tyger has, which he loves.  He especially love to lie on the blanket when he doesn't have any pants or jeans on and...well he really likes it.

The tiger onesie arrived and we were both excited I got him undressed and put the onesie on and...he went mad and told me he wanted his clothes on.  After making a fuss about his jeans for frack knows how long, he was begging to wear them and refused to wear the nice soft onesie with no waistband.  This sort of thing comes up a lot.  Later, after leaving the onesie lying around for him to get used to (like how you introduce a new cat to an existing one slowly and a bit at a time) he said he wanted it on..woohoo!...over the top of his clothes...ah.  I couldn't help but think this was defeating the whole point of the thing and was ready to write it off as a failure but I think he gained encouragement from everyone's reaction to how cute he was and the next day he allowed me to put it on him with only pants underneath.  The Goram zip was a bit scratchy on his chest, though, so I had to add a t-shirt as well.  And that's what he's been happily wearing for two days now: pants a t-shirt and his tiger onesie.  No fights after the toilet and he actually brought the onesie to me this morning when he got up so I could put it on him.  I've ordered a Gruffalo one in similar fabric but I'm a bit worried about how I'm going to wash the tiger one before it arrives.  Evening laundry, perhaps.  Or...I don't know.  I'm sure cleanliness is overrated.