My thoughts about the 'cure' view.

I did a bit of advocacy in a mostly NT group for a friend last night. It went well, I think. She was upset about people telling her that they wanted ASD cured. She posted in the group that she did not want to be cured and others did not understand why she would not want a cure. I helped her out by sharing a few thoughts. 

My response was inspired by this brilliant post shared on the Diary of a Mom Facebook page. Her description of Autism being a pervasive condition is brilliant. 

I read this brilliant blog post a bit later on about the positives of being Autistic which helped me form my view and words for my response to my Autistic friend's frustration and pain at being misunderstood in an NT group.

Here is my response.


I'm autistic and don't want a cure. I have times where I would be considered low functioning and non-verbal. Then I have times where I can communicate verbally, and interact quite well with others. Sometimes people can't tell I'm autistic, sometimes it is very obvious.

I think what many autistic people have issue with is the word cure. Autism is a pervasive disorder which means it pervades everything - our brain, our body. Autism cannot be separated from us. It is a neurological condition. I firmly believe in improving overall health - diet, self-care, teaching emotional regulation, managing sensory issues, medication if needed, helping us to understand social cues, teaching body awareness, and helping us to understand our own neurology. Diagnosis and fully understanding what that means can be a powerful thing. It definitely was/is for me.

So much is written about the negatives of Autism and not much positives. There are definite positives. My intense thirst for knowledge, my obsessive nature, my need to research about things before making a decision, how in-tune with my son I am, my need to improve myself. These are all things I do which are positive which is due to being Autistic. [added this after].

I am currently on medication which has changed my life for the better. Without it I would be having meltdowns a lot of the time, a lot more non-verbal, living as a hermit and not able to be the parent that my son needs me to be. I think if the language was changed to improving health, and supporting autistic people in a way that suits them that would make a big difference. 

I think it is up to each person to choose how they want to label themselves and what kind of support they need.

I have read some brilliant blog posts written by non-verbal autistics. Non-verbal does not mean they can't communicate or understand the world. It just means they need a different way of communicating - written communication. So using an iPad or computer literally changes the lives of non-verbal autistic people. Google Amy Sequenzia or Carly Fleischmann, if you want to know more.

I think the most important thing is to remember that autistic people just want to be understood and accepted. We have it tough seeing the world from a different perspective and never really fitting in. Many of us have formed our own communities mostly on-line and have found acceptance that way.

Most important is to remember 'nothing about us, without us.' We need to be part of the conversation over what happens to us and how we are treated.

I have had over 40 people in the group like this statement and no negative comments. I am pleased with my first experience with advocating in an NT group.

Update

I have not written in my blog for nearly 6 months. I have been very depressed and traumatised by a few things that happened to me. I am finally feeling much better and starting to heal from the trauma. I am a stronger, happier, more mature person as a result. I was so depressed that I literally could not get the words out verbally or in writing. So I just did not much of anything. I really struggled but I am finally starting to heal. It has been a very dark time for me. I am glad to finally move past it. 

I have some exciting things happening in my life. Which I will write more about when I have time. I have three articles/blog posts that I am currently working on so am focusing on that for now. 

Things are about to get interesting on this blog. Enjoy!

A poem by one of my Autistic friends.

This amazing poem is written by one of amazing friends. Enjoy! I relate to so much of it. I got quite emotional reading it.

Musings of an Autistic Mind

How can I make you see my world?

This existence I live, you cannot perceive

Colours are bolder and brighter

They speak a different language to me

A highlighter on life lets me embrace

Things you may not see

You think I am looking at you

I am talking to you

Though distracted by 

That colourful necklace you always wear

Small things demand me to notice them

Like a great big neon sign

Pointing and saying

Look Here!

Lights illuminate the darkness , but

They test my tolerance and become too much

That flickering fluro light

Hurts my head tonight 

Fragrances assault my senses

Some tell tales of beauty

Others make me feel like I’m drowning

I cannot breathe

I channel your life 

Completely by accident

You are pregnant, I’m sure

My sense of smell and taste has gone into overdrive

Should I have not said anything?

You look at me like I am crazy

But you take a test

I’m right.

I feel out of synch with your expectations

Confused and desperately trying to decode

What you are really not saying

Social situations leave me reeling

As I try so hard to mimic 

What I think you want to hear

But end up sounding like a parrot

Or that I simply don’t care

Endless lines of coding in my brain

If, Then, Else

If only friendships could be that easy

Most people leave me open and raw

A wound constantly tearing 

This me I am, apart

So easily damaged

My heart beating, exposed

Oh and lust

Dearest obsessions

You fill my mind and steal away my thoughts

I get lost in the endless abyss of details

Object, animal, human being

All hold the possibilities

Of all consuming passions

To know so completely and 

Master your inner workings 

I want to be your everything

All or nothing

On or off

Black or white

I am bound

Overwhelmed

And oh so tired

Drained 

Or bouncing off the walls

With inspiration, colour, life

My mind racing

I cannot sleep tonight

A seesaw of emotions

In endless waves rush in

To consume me

Drown me

Violently accost me

Or

Envelop me

Smother me

Lovingly melt me

All are invasions of 

Others thoughts and feelings

So confused

Is this feeling

Me or you?

No wonder I avoid crowds

They bombard me

All six senses

So much conflict

So much noise!

I lose who I am

Who am I?

I know I have empathy

I feel it all too much

Someone turned it way up

I find myself in your shoes

Even when I don’t want to

So I put myself last

Always last, 

Ever loyal

My needs surpassed

~Cherie Patrick.

Musings on friendship

A week ago a friend of mine sent me the following list as a list of guidelines that she thought would be helpful for NTs to understand about having a friendship with a neurodiverse person (ND). My initial response was this: 'It's great. I wish more people were this understanding and respectful of different people.'

I believe it was inspired by this fantastic blog post by AutisticChick. Highly recommend reading it. It is an articulate and expressive account of what autistic people encounter fairly often. I think boundaries in friendships and relationships are so important. 

The following was written by the same friend who sent me this message.

Musings on Friendship (from NT perspective)

It has occurred to me that there is too much pressure in friendships all the way around. But especially so in the NT-ND friendship.

I believe that the NT should take the lion’s share of the social responsibility in terms of removing pressure and encouraging openness and honest acceptance.

I believe there should be guidelines within friendships:

1. Accept that each person is individual and unique and that your friend is probably completely unique.

2. Accept an answer of “no” the first time and don’t keep pushing. I liken this to social rape. Harsh? Yes. But what else do you call it when a person says “no” and the answer is not accepted. But...

· I know s/he really wanted it

· S/he just needed a little encouragement

· S/he needs to loosen up and have some fun

Can you see what I am driving at? A person, whether NT or ND can speak for themselves and their needs (as they see them) are valid even if you do not agree with them

3. As the NT person in the relationship, try to be considerate and give ample warning of any visits or planned/proposed outings, try not to put the ND person on the spot wherever this can be avoided.

4. As the ND person, please say no if that is what you mean/want to say. Within a true friendship this should be accepted without upset, irritation or another emotional penalty (see point 2. Above) and certainly no emotional blackmail!

5. Please do not try to “fix” your friend they are not broken nor is there anything wrong with them, they simply see life from a different perspective to you.

6. If an outing or visit is planned, please set a guideline on anticipated time and activities (e.g. I would like to go shopping with you for two hours on Monday or I would love to come over and see your new puppy, I only plan to stay for half an hour, etc)

7. If you have an outing with a specific goal, as the NT in the relationship, please leave time available in case it does not work out so that you can complete the goal another time (e.g. you need to buy a dress for a party coming up and something happens causing the ND in the relationship to need solitude – obviously not going to work being out in a crowded mall with parking time limits etc – plan that you may need to do another trip at another time alone) and do not make the ND feel as though they “owe” you anything as they do not and this will cause strain to the relationship through adding pressure and expectation.

8. Please foster a relationship with your ND friend where they will feel completely comfortable sharing their space with you without having to do anything other than... well share the space. So let them go about their day and just “be”.

Hiatus from writing

I have been taking a hiatus from this blog to focus on vlogging. I have been rather busy. If you wish to watch some of my vlogs, please check out my Youtube channel. I am planning to do some more writing soon. For now I am really enjoying vlogging. I have a number of ideas.

Ableist Concern

I have not changed. I am still the same person. I'm just not pretending to be someone I'm not, anymore.
I've had people say to me, 'But you coped just fine doing xyz.' 'You've gotten worse, not better. You're using your Aspergers as an excuse to behave badly.' 'Aren't you low in something? Better get checked out.'

What those people who do not understand me nor attempt to understand me, do not get, is that those times I appeared to be coping ok was just acting. I can appear to manage things quite well. I can socialise when I need to. I have times I manage quite well. What they do not realise is how incredibly draining and exhausting it is for me. How I feel anxious and on edge most of the time. I appear to be coping just fine outwardly but inwardly I'm a mess and feel like I am barely coping socially. I will come home after an outing and I will literally collapse on the couch and stim. I will not have energy to do much more. I will spend the rest of the day trying to regain spoons in order to continue and cope with all that is expected of me. Which, as a parent is very challenging for me. I would go to these outings because it was the 'Mum' thing to do and then come home exhausted, only to face having to parent my son when all I wanted to do was have solitude to recover.
It takes a HUGE amount of my energy which I am often low in to maintain that level of normal-ness. You know what, I can no longer maintain it, nor do I care to. I'm finally free from all of those ridiculous expectations that are placed onto me by well-meaning misguided people. I choose not to live my life that way. I choose to find my own path and live life how best it suits me and my family.
I am ridiculously tired of being treated like and labelled as being 'difficult.' I'm not actually trying to be difficult. I just desperately need others to open their minds and try to understand how challenging life is for me in this not very Autism friendly world.

For now anyone who doesn't attempt to understand me on my terms is being kept at a distance because I just can't cope with their ableist attitude. It's like 'oh you can indeed do this, I know you can, just try harder and you'll be fine.' 
There's a pic from Karla's ASD Page which illustrates this perfectly. It features a person in a wheelchair with an able-bodied person standing above them telling them to try harder to reach something they clearly can't reach. It's the same for autism. We are different, we do not do things the way the rest of the able-bodied world does and we never will. I wish others would accept this and make an effort to understand us.

Actually I will not be fine if I try harder to be more like how others want me to be, I will get worse. I have already tried being the person others want me to be and I was not happy at all. I finally feel a sense of peace within myself. A feeling of self-love and acceptance and no one is going to take that away from me.

Ableist concern: where able-bodied people show their 'concern' for a disabled or differently abled person and to suggest whatever they like and not listen to the main person involved thus rendering the disabled person invisible. The disabled person is told they don't see things 'correctly' (apparently) so they don't get to have a say in how their own life is run. This 'concern' is extremely hurtful and undermining to the main person involved.

My Spectacular Breakdown: Burnout, Acceptance and Action.

I experienced Autistic Burnout in February this year.
Here are the links to the three parts:

My Spectacular Breakdown: Autistic Burnout

My Spectacular Breakdown: The Acceptance

My Spectacular Breakdown: Action Plan

I hope my story can help others in their journey to better understanding themselves and accepting themselves.