The Aspie Adult – An Uncomfortable Reminder?

Ostrich This is a challenging post to write, but never one to shy away from speaking the truth, I decided to go ahead – and hope it would make people think – and not jump to defensiveness.  Buzzing around in my head, were questions such as “will it offend people?” and “will it alienate people?”  As an adult with Asperger’s, I have been only too aware of my differences over the years and the difficulties I have faced.  Granted, I was not diagnosed as a child, so I existed without any of the supports that are available today for autistic children and it could be called into question whether I would have fared better with those supports – but I suspect not.  I slipped under the radar – as do many Asperger’s females, people might have thought I was shy or a bit anxious, but no-one ever questioned me being “normal”.  The majority of high-functioning adults of today, were not diagnosed as children, many are still undiagnosed, but we exist.  Childhood supports or not, you can do nothing to undo the fact that you are autistic – and will always be autistic.

As an autistic adult using the virtual world of online forums, I have found that there is just as much (in fact probably more) risk of communication problems with others as there is in “real life”.  I wondered if I was singularly argumentative; didn’t realise that my directness was viewed as just plain rude by others and I questioned myself.  But this still didn’t explain it, bearing in mind that no matter how cross someone might make me online, I remain calm and collected and respond as professionally as possible.  At times this seemed to inflame people even more, because they were losing their cool and I wasn’t.  And what puzzled me even more, is that these were people already immersed in the world of autism, who were criticising ASC traits, or communication style, in an adult, yet their children had those same traits that they were asking society for understanding of.  Then I started reading of the experiences of others on the spectrum, who also faced problems on forums.  It struck a chord, when one person described themselves as being targeted and pushed out, by parents of autistic children, who they assumed would be grateful for a window into the mind of an autistic adult, to enable them to understand their own child better.

I have found this too and I am still trying to understand why.  Of course there are the social games that exist in NT society, those games we on the spectrum fail to understand; do not play and tend to either fall victim to – or are blindly oblivious to.  It stands to reason I guess, that those games will be the same on forums.  I have realised that parenting forums, seem to be about exchanging mutual stories and supporting one another, but that the expression of oneself as an Asperger’s adult, doesn’t always seem to be appreciated, especially if it involves the hard facts of life.  The NT parent often doesn’t seem to want to face, that no matter how much supporting/treating/attempting to “cure” their child, they will still be highly unlikely to have the same life as an NT.  They will remain autistic as an adult, even if they are existing in a mainstream way, they will have anxiety over things that NT’s won’t; their sensory difficulties will always play a part in their lives even if they manage to mask the impact of them for periods of time; they will always need a certain level of control; they will usually be exhausted by socialising and may avoid it; they will misunderstand others and be misunderstood by them; struggle in employment (around 75% are unemployed or only in part-time employment) and relationships – including romantic ones.  Even those with the so-called mildest form of autism will struggle and will be prone to mental health issues, due to trying so hard to fit in, but always having difficulties doing so, or it just being so plain exhausting.  This link gives some examples of how autistic adults struggle: http://www.iancommunity.org/cs/adults

Parents love their children and desperately want the best for them (I’m a parent too!), are trying to ensure they are able to “fit” into society, but this is part of what is driving the lack of acceptance, lack of understanding, lack of reasonable adjustments, for us ASC adults.  We don’t want to have to conform to an NT way of being, we want to be allowed to be us – and for that to be OK.  NTs wrote the rules for society, but they often don’t fit us, why can’t new rules be added, most of the existing ones are ridiculous anyway!  It’s why I challenge my autistic children’s schools to make those adjustments, to adapt things for them, because they are suffering in being forced to fit in and change is needed.  If you don’t believe me, ask yourself why places like Autscape and Autreat exist.

So I came to the realisation, that it is because an autistic adult is an unwanted reminder, an uncomfortable acknowledgment for some parents of autistic children, that their child will be like me one day.  An autistic adult, still having struggles.  For any parent, they want their child to have equality and be able to achieve.  Admitting that it might not happen, certainly not the way they hoped, could be a tough thing to face.  That all those supports that help their child get through school, and catch up with childhood milestones, might not bring the idealistic end result they hoped for.  There are parents veritably traumatised by their child’s autism diagnosis, they go through a kind of grief, depression and sadness.  So perhaps they plough all their efforts into obtaining those supports, hang on to the fact that it must be helping and their child will somehow “recover” enough to not seem autistic.  But what they don’t see, is that sometimes, this might enable an autistic child to grow up to “pass” as NT, to mask many of their difficulties, but inside, they are often still going through the same torments, difficulties, challenges and stress as they ever were.  An acquaintance told me once, that she had immersed her Asperger’s daughter in as many play-dates and sleep-overs as possible as a child.  She grew to be a past master at fitting in, but it did her absolutely no favours as she was suffering greatly inside as a young adult.  The pretence actually adds to the pressure and the stress we suffer.  It’s what I advocate as being ill-advised, the square peg into the round hole mentality.  I understand that it is doing a child a service by giving them speech and language therapy, potty training them and calming aggressive tendencies, but there are so many autistic traits that need to be accepted as just, OK.

It just saddens me, that NTs often want to play those games, to make themselves feel better.  So here are some questions for NTs to ask themselves:  Can’t we celebrate some of the positives of having autism?  Can’t we allow autistics just to… be?  Do we have to be shocked and angry when someone tells the honest truth without malice?  Do we have to shut people out because they don’t conform?  Do we have to expect them to be like “us”?  Do we have to continue to force these square pegs into round holes?  Because society is currently blinkered, does that mean it has to continue to be?  When we face an autistic adult, can we not stop turning our faces the other way?  Can we not stop criticising their traits as something to be ashamed of, or ganging up to ostracise them?  Is this what we want for our children?  When our children are bullied or ostracised in the playground, is this what we want to replicate as adults?  Or do we want to be like those playground bullies?

So next time you are online (or even in “real life”) and you don’t like an ASC adult challenging the status quo, delivering information in a factual way, or saying the things no-one else will say, maybe try opening your mind and realising that if we don’t do it, perhaps no-one else will.  Everyone has their purpose in life.  Some of the greatest minds that have existed are thought to have been autistic.  Sometimes, it’s the black sheep that makes the biggest mark.  And that person allowed to be themselves, could be your child.

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Another autism poem…

illegal aliens

Illegal Aliens

They know not us, we are other, us alone

Separate, different, alien, unknown

Judging by rules made for the masses of same

Thinking in their boxes, like a runaway train

The army is building, the new breed it has come

This world of wrongness will become, undone

Like the fly in the ointment, we exist we are real

Ignoring us easily, like it’s no big deal

Huddling together against our kind

You live in the chains of your minds

Despite how hard it is struggling through

I’d rather be like me, than be like you

Pretending to be one of you, to merge

Whilst inside, I feel myself want to surge

Societies that are blind, crumble in the end

Let us show you the way, let us, you mend

Making Sense of Sensory Issues

Sensory OverloadSensory issues are often a core feature of autism spectrum conditions.  There are two types: hypersensitivity (extreme sensitivity) and hyposensitivity (lacking sensitivity).  This post is about hypersensitivity.  I have multiple sensory problems, I guess, they wouldn’t be problems if I didn’t encounter the things that trigger them, but life involves sensory input so that would be impossible.

Auditory sensitivity means that sounds almost assault your ears when they are above a certain level, or are of a certain pitch.  It quickly gets very stressful, and it can be exacerbated by tiredness, illness or stress.  Overwhelming levels of noise can lead to meltdown, and will in many children, adults would normally try to remove themselves from the situation or perhaps invoke “stimming” (self-stimulatory habits officially called stereotypies) to diffuse the stress.

If a noise is too loud for me, afterwards I can get a reaction in my ears that sounds almost like a muted thumping and it is unpleasant.  Whilst uncomfortable noise levels are going on, it can feel almost painful to my ears.  I can’t bear so many things that others think is mad, such as someone crunching food in the same room as me, someone blowing their nose or sniffing, someone noisily picking at their fingernails etc., although those aren’t necessarily disturbing in volume, it’s just their presence that distresses my ears.  My hearing is so sensitive that I can even hear sonic insect repellents that are supposed to be above human range.

Tactile hypersensitivity, known as exteroception is an irritant.  Clothing can feel very uncomfortable and annoying, labels feel itchy, waistbands can make you feel panicky even. I feel the tiniest single hair or miniscule insect land or fall on me and  I can’t bear even one tendril of hair brushing against my face.  I also can’t bear the feeling of a sock getting rucked up under my toes…and I used to think everybody felt the same as me.  I just thought it was life’s annoying things.  Since knowing which of my traits are autistic I have identified so much that I thought everybody had, and realised they don’t.

Interoception, is an awareness of internal organs.  This is a little known one.  Many times when I have had health complaints I have felt something that was wrong inside my body and when it was checked out, I was correct.  When carrying both my children, I felt them moving incredibly early and the radiographer conducting the scan told me when I mentioned it that “it isn’t possible”.  I beg to differ as I felt it!  When your body is that sensitive you know what is and isn’t part of your body.

Optical sensitivity, light and bright colours hurt my eyes.  I often wear sunglasses even on cloudy days and almost always have the sun visor down no matter how dull the day (yes, Aspies can drive!).  Fluorescent colours make my eyeballs literally ache and I really pick up on lightbulb flicker.  It’s hard to explain it to someone who doesn’t have it.  I also meet all the criteria for scotopic sensitivity http://www.irlen.org.uk/ (also known as Meares Irlen Syndrome – how many syndromes can one person have!) which is where you have night-blindness, are affected by glare from artificial lights and certain coloured backgrounds with text are harder to read, amongst other things.

Smell sensitivity, known as olfactory hypersensitivity is a difficult one.  Bad smells can easily make me violently dry heave and I can smell things long before others can and when others can’t at all.

Food textures – I can’t bear stringy food, slimy food, gloopy food, food with little bits in (I can gag extremely easily over textures) and am frequently seen pulling bits and pieces out of my mouth when eating.  If I see a tubey vein in a piece of meat, well that’s it for me!  Sorry for the descriptive element, but it does help get the picture.

My equilibrioception, which is vestibular, or balance sense, is poor, I have never learned to ride a bike and doubt I could manage it even now.  Coupled with my proprioception problems (see next paragraph) it makes for one clumsy person!

My proprioception, which is someone’s sense of body in space, is bad, I am the clumsiest person ever.  I constantly walk into door frames etc. burn my arms on the iron and oven, bruise myself (I’m so used to it I barely notice it and wonder where all the bruises come from).

So as you can see, it’s a pretty long list.  For an autistic child going through all these sensations, you can understand why they can meltdown pretty quickly when their sense are assaulted by all these things.  This is also why people on the spectrum need time out to recover when things have been overstimulating.  It can build up as well, you are being overloaded throughout the day without even sometimes realising it, and then you suddenly reach a point that it’s all been too much, until you feel like this:

Sensory Overload 2 So, with that, I leave you with another quote:

Jane Wagner

“Reality is the leading cause of stress amongst those in touch with it.”
Jane Wagner

A poem I wrote once about being on the spectrum…and early diagnosis

NAS poster(poster I designed, displayed at NAS Autism & Participation Conference 28th January 2014)

Autism from the inside view

When you see life through your own set of glasses
When your soul exists worlds apart
Your senses too keen, fragile and shattered
Confusion, is merely the start

***

The world assaults you from all sides
Why are others not also the same
Why are you different, why do you not fit
Why is it you, that others blame

***

You feel like a snail needing it’s shell
You feel like everything’s wrong
People don’t make sense to you
So you sing the saddest song

***

Your anger may rise, your fear overwhelm
Your tears fall unrecognised
Where is the world that for you would be home
Where is that place, that yourself would be prized

***

Hiding away becomes easy, when understanding is none
Encounters with others a trial
Your words feel like those from a foreign shore
And you feel from others such bile

***

You want order and control in this world of chaos
You want others to accept and be aware
But we are the minority in this place
And the majority don’t seem to care

OK, it speaks of the more negative outlook I know, it’s not all doom and gloom, but this is the reality for many people on the spectrum, and this is why it’s so important that early identification and diagnosis is provided for people, because as the following link shows, outcomes for adults who receive late diagnoses are poor: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome and http://www.shu.ac.uk/faculties/ds/education/theautismcentre/docs/ASPECT%20Consultancy%20report.pdf.