Tag: Spectrum

There are no ends, it’s not a lovely colourful rainbow with one label at one end and another label…

There are no ends, it’s not a lovely colourful rainbow with one label at one end and another label at the other.

There’s another round of an article going around the social media channels where an attempt is made by a non autistic parent to effectively place autistics in conflict with one another. It’s completely unhelpful and is woven through a fabric of tragedy and self pity.

Liberally salted with the language of deficit and lost dreams of parents for the child they wished they had, that never existed and a an absence of any condiment of the language of strengths or skills or genuine appreciation for the actual child they have.

It attempts to place what she calls severe or classic autistic people against the rest of the autistic community. Our very real struggles are dismissed as simple quirks, as though these struggles are virtually a figment of imagination.

They aren’t, that’s the reality of it.

Tiresome is the language of despair, loss, and deficit of non autistic parents about their autistic children. Just plain wrong is the application of the so-called autism spectrum as if it is a line with those fitting one criteria at one end and those fitting another at the other.

When challenged about the fact that the spectrum is not a simple line with two ends, a parent said well it’s a colourful rainbow then. This kind of language is so unhelpful and it makes attempts to place autistic people at a particular point on an imaginary line and imagines that is where they are forever and will never change.

Humans change and develop, this is no less true for autistic humans than non autistic human. What exactly the spectrum is and how to define it is always problematic, it’s difficult, it is hard to conceptualise a visual concept for it. I’ve seen and heard a range of explanations, some quite good but none really conceptualise it in a way that is really clear and really able to be grasped and visualised.

What is true, absolutely for me, an autistic woman, and for many fellow autistics I know, is that, the idea that we occupy a space at one end or the other, indeed any one point along some arbitrary line is a complete fiction. The space on the spectrum we occupy fluctuates and changes from moment to moment, day to day and year to year. It just does.

Functioning labels always seem to be the culprit in positioning us arbitrarily on this imaginary line, but just like every human ever to exist, autistic humans have fluctuating functioning in different areas of life, and they change all the time. Sometimes we are able to function extremely well, negotiate much, navigate sensory input and apply social and executive functions to such a level of prowess that we have levelled at us the statement – ‘but you don’t look very autistic’

And then there are the days we lose our words.

The days we can’t manage to work the washing machine.

The days where answering a phone is like an act of impending doom.

And that’s the thing, functioning for anyone is always transient and never constant. For autistics perhaps the variance or fluctuations are just more severe but, they fluctuate just like everyone else’s functioning.

Please stop, pitting us against each other, characterising us as occupying some imaginary point on a line, and please, for the love of all that is good, please stop imagining that your autistic child is destined to always be at the place they are now, they will grow up, they will learn things, they will find strengths. Please, I implore you to be their best advocate by standing with them, discovering with them, journeying with them to grow and mature and learn and become the best, most authentic, most wonderful human persons they can be.

Just don’t place anyone on an imaginary line. The line doesn’t exist, there is no ends of the spectrum, there’s just humans, with a somewhat different neurological wiring than the non autistic humans have. And you know what, that’s Ok, we’re just different not less, just different.

Support us. Learn with us, from us, and support us. We want to be the best we can be, we don’t want to be a list of deficits or the ghost of some imaginary person you dreamed would be your child.

In the end, we want what all humans want, love and acceptance for who we are. The potential of what we can become is impacted greatly by this.

Acceptance, not awareness, not deficits. Just acceptance.

regrounded

Our senses are not just about what we like to eat, fragrances we like or don’t there is far more at play than this. Most of us can name the five senses. But hang on what if I told you there were not five senses but more than five. I’d like to introduce or remind you to the vestibular and the proprioception senses.

Our vestibular is about how we experience balance in our world and the proprioception is about the place of our body in the world. Obviously this is a very simplified explanation but it suffices for this particular post. In order to be really grounded we need all of these senses to be considered. If not we will experience sensory issues and this is particularly an issue for autistic people.

This post is more about a different kind of grounding, an emotional and peaceful connection with the world we inhabit. Just as one needs the physical senses to be in play in order to be grounded and able to be at their best so they need to have internal and intangible grounding in order.

The last week has been a somewhat ungrounding experience. I discovered that my dearly loved grandmother is dying. As she is in another state I felt it pretty darn important to get in the car and see her.

I was majorly ungrounded when I saw her. A shock to my system of experiencing the strong formidable and wonderful grandma who was my safe and loving and caring woman lying in a bed awaiting the shrugging off of her mortal coil was a shocking and destabilising experience.

I was in need of connecting emotionally with some special places. I chose to travel today to the first childhood home I really remember. It has been 40 years since setting foot on this property. It was nothing less than an amazing experience. 40 or so years ago I sat and played on this dirt patch with my bruncle. There I am on the right. You can see joy on my face. My bruncle would soon be lost to me after this moment and traumatic times would ensue.

Closure around this place and what happened there has never been able to occur. Today I visited this place again, I walked this earth. I wandered this property. I looked at these walls, I looked at this exact place. It was a highly charged moment. Tears welled and thoughts roved around my head.

Forty years seem a long time to leave something hanging. I guess in a sense it is. There have been many, many things over the course of living that I have reflected upon and worked through. Yet the loss that occurred at this place was not one of them.

The loss of my bruncle was something I was deeply traumatized by as a child, and something that I had inadvertently taken on some level of responsibility for and certainly was something that supplied a massive level of fear of the same occurring to me as a child.

Something happened in my heart and soul and spirit today as I walked these places. Something changed that realigned, reground my emotional systems. Enabled me to take ownership of some things without them taking ownerships of me.

I was able to take ownership of the truth that yes I am indeed my father’s son. And that means just that, and only that. It does not believe as I have allowed myself to feel that I am the embodiment and repeat of my father. No that is just ludicrous rubbish.

I have in fact received genetic material, mitochondria and chromosomes and other chemicals and genetic material. This has an impact on who I am, obviously from both my mother and my father. An example of this is being autistic. I see this played out in my offspring also.

The point is though it does not mean I will become who he is. It does not mean I must fear that in myself or in my parenting of my children. I have inherited genetic stuff, I have not inherited his choices. I have not inherited his experiences, I have not inherited his consequences.

Yes I am my father’s son. Yes I will make my life and walk onward as his son making his very own way in this big wide world in which I walk.