My thoughts on being Censorship and being Autistic

Last year I had a bad experience in a group which was meant to be for Autistic people but oddly there was an NT person running it. This of course raised a red flag for me. I now have hindsight about the situation which happened in this group and realise now why the person involved reacted the way they did. This was the comment I posted in the group. I can clearly see that I too over-reacted to the situation due to what was going on in my life at the time. However, my thoughts on censorship are still valid. 

'I have decided to leave this group because I do not feel safe or welcome here. I asked a genuine question regarding something and my comment was deleted. I do not like the fact there is censorship here because I personally believe that censorship makes it extremely difficult for Autistic people to understand the world and how it works. If we don't ask questions, how will we ever know or understand why things are the way they are. There is no harm in asking genuine honest questions which I did and my comment was deleted. I no longer feel safe here. I am sorry it has come to this.'

I do not understand how the world works so I need to ask questions in order to learn and understand how it works. Not allowing me a safe space to learn how the world works is not conducive to learning.

I have a thirst for knowledge and desire to grow to be a better person. If I ask you about something, please do not get offended. I am genuinely confused and desperately need to understand. Having my questions silenced or deleted is censorship and it inhibits my understanding and learning of the world. That is not ok with me. Listen to me and respect me. Learn my language. I have a different way of looking at the world and speak a different language. Please don't place your assumptions and ideas of language onto me. It inhibits my voice and invalidates my experience.

I am resplendently Autistic.

Trigger warning for talk about self-hate and feeling suicidal.

Lately I've been thinking a lot about identity in terms of who I am and how my diagnosis changed me internally. How it changed how I viewed myself. Being autistic is an identity to me. It explains so much about me. I cannot be separated from 'my autism'. Autism colours every single experience I have. It did before I was diagnosed. I just did not know about it or understand why I felt, acted and thought so differently to most of other people I met and interacted with. I felt like an alien from age 6. My diagnosis changed and saved my life. I do not suffer from autism either. I live it. It's my life. I'm tired of hearing people who say it has to be person first language. That it must be person with autism. I'm not with autism. It pervades my being. I am Autistic. Autism is not a separate part of me that I carry around and put on when I feel like it. Autism is not something I wear or choose to put on. It's always there colouring my world, thoughts and feelings. I actually really like being Autistic, most of the time.

I find it very threatening when people try to tell me to be more normal or tell me to fix myself or that autism can be cured. I have spent years hating myself for not being normal enough. Hating myself for not being able to fix myself. For trying and constantly failing to fix myself so I feel less, cry less, connect more, understand socially, talk less, talk more, to care less, to not be so anxious, to go with the flow. Every single time I tried to do those things I could maintain it for a short time but then it would exhaust me. I would perseverate over and over trying to figure out why I could not be like that all the time. I wanted to be that funny, social person, have-it-altogether person. I couldn't maintain being that way. I didn't know who I was a lot of the time. I would try out different persona's, put them on like masks, mimicking others, hoping one would fit, hoping one would be the 'real me'. People talked about finding themselves, how great that was, how happy they were now that they had found who they really were. I unfortunately kept losing myself or thinking I did.

I find it very triggering and upsetting when others tell me to be more normal, to fix myself or that there is a cure for Autism. I have spent so many years trying to be more normal, to fix myself and failing incredibly that I find it painful and upsetting when others around me have this attitude that I can just fix being Autistic. I cannot, I have tried and failed over and over. In fact trying to be more normal became an obsession for me, a very unhealthy obsession. Thankfully my new understanding of myself stopped my obsession.
I have decided I do not need that attitude in my life, so I am selective about who I interact with. This is a healthy boundary for me. I am too fragile and vulnerable right now to cope with others trying to project that onto me.

It was not until I started learning about ASC, females and how it tends to present differently (Aspergirls by Rudy Simone) that I began the turbulent journey of self-discovery, acceptance and who I really was. I believe the new knowledge about being Autistic saved my life as I was suicidal and hated my life. I did not know how to keep living the way I was. I felt so fractured after becoming a Mother. I could not maintain the other selves. I felt so lost, alone and broken. Reading Aspergirls was like the light at the end of a very long, dark tunnel. I finally had answers and a small beacon of hope. That hope began to grow and grow. I finally had hope for a better life and a way of living that suited me.

It's been very turbulent since my diagnosis. I was already very overwhelmed and was trying to do too much. My diagnosis was just one more huge overwhelming thing added to a big pile of things that were already too much. I fell apart. I regressed. I cocooned myself away from the world. I hid from the world. The world had suddenly become too bright, noisy and overwhelming for me. It was too hard for me to try to stay connected with people in person. I discovered the joy of online socialising. I discovered AS women’s groups. I interacted with so many women who were similar to me. It was amazing! I have learnt and am still learning so much from these amazing women, many of who are still my friends today. We have never met but we connect and share so many similarities. I read obsessively about autism and blogs by autistic bloggers. I processed. I accepted parts of myself I had tried to keep hidden as I thought that made me evil and bad (thanks to religion). I went through numerous overwhelming emotions. I grieved for the little misunderstood girl and teenager who did not get the support she needed. I felt joy, relief, sadness, and anger many, many times about so many different memories from my past. I felt those same emotions in terms of my future and who I really was. It really was very turbulent and difficult for me. I began take off layers and layers of personas and walls of protection I had put around myself, strip them away to examine my true self. I found this very healing. I am still doing this process of examining myself but it has settled down.

Things have settled down for me internally. I don’t feel the raging storm of emotions, memories. The intense need to know every single tiny thing about Autism and what being Autistic means to other Autistic people. I still find it fascinating and am obsessed but I don’t feel this intense need to know it all in order to understand how I work. I finally know myself and how I work. I am kinder to myself, I don’t hate myself and I don’t feel suicidal. I have suicidal thoughts occasionally but I let them pass through my mind like a train on a journey. I don’t need to accept or acknowledge them.

When I say I am Autistic, please don’t correct me. I finally have an identity which explains an incredible amount about me, who I am and how I work. I like who who I am, finally. I like how I do things, how I see the world, how I communicate and interact with others. Understanding myself has given me the power to work with myself rather than against. This is indeed a powerful thing for me. 

I am resplendently Autistic.
I wrote a poem last year titled 'I am Resplendent.'

[Image is of me (Kezza) on a swing (one of my favourite calming activities to do - a stim), wearing a gray tshirt with a butterfly on it. I am swinging in middair and smiling].

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.

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”.

If he was my child

If He Was My Child

He'd behave if he was my child

I'd teach him right from wrong

I'd put him on the naughty step

Until his naughty streak has gone

But he isn't your child

He's mine and I know what's best

My son isn't being naughty

He's just different to the rest

If he was my child

He'd do as he was told

I wouldn't accept bad behaviour

Or him acting bold

But he isn't your child

And I know him better than you

Autism makes him different

But unique and special too

If he lived in my house

He'd live by my rules

He wouldn't take us for a ride

And he wouldn't take us for fools

But he isn't your child

And I'm so glad that he's not

You couldn't handle what I do

You'd be out of there like a shot

He is my special child

And he was sent to me

Because I deserve him

And can treat him specially

By Donna Woods

From here.

Reading this poem has been bittersweet for me because it reminds me of my own traumatic childhood. I wish Autism was understood when I was a child as my dad tried to do all of those things to me but of course it just made me stronger. He didn't succeed in disciplining the Autism out of me. 

Swinging: my favourite stim

Swinging is my favourite stim by far. All my life I have loved it and still love it. There have been numerous occasions where it has calmed me down and refreshed me. I feel like a new person after I have had a good long swing session. It helps me to process everything and think more clearly. I get a natural high from it. It's great. My iPod with my favourite stimmy music + swinging = stim heaven.

I remember swinging many times over the course of my life in order to de-stress and cope better. Whenever I was near a swing I would always make the most of the opportunity and have a big, long swing. 

When I first left home I had a rough and challenging time. I was pushed to leave home too early. I wasn't ready to leave and be on my own. My Father basically wanted to get rid of me so I wasn't a financial burden to him anymore, which was extremely hurtful at the time. Leaving home too early made it very challenging for me cope with living on my own and managing. I really struggled. I felt so alone and misunderstood a lot of the time. Yet I did not have the words to say this or anyone to really talk to. It was a tough time.

I remember one particular time there was a lot of stress and upset going on in my life. The person I lived/boarded with was not very nice to me at all. There was other stressful things going on that I didn't understand nor know how to cope with.

I remember walking to the park which had swings near where I lived and swinging for 30 min. I timed it and remember how long I swung for. I needed to swing this much to cope with all the unknowns and stress of my life. I felt like a new person after that. I used that swing a number of times while I lived there. It helped me get through some tough times.

When I was doing my practicum for teaching. The place I boarded at had a park across the road. I found it very stressful and unsettling living in a strange environment. I never once felt at home there so often did not know what to do with myself. So I often went across the road to the swings and had a big long calming swing to process and cope.

When we lived in another place, there was a park within walking distance. I would walk there whenever I could and have a big long swing. I always felt so much better afterwards. 

Where we live now there are three parks within walking distance and they all have swings so I try to have a good swing at least once a week. My son loves swinging too. Often I will put him in his baby/toddler swing and push him fairly high. Then I will get on the other swing and have a short but rejuvenating swing until his swing has slowed down. We swing together for awhile. I reach out my hand and try to hold his briefly. He loves me doing that. Then I will repeat the process. We have a lot of fun together at the park.

I prefer to be able to go on my own at times and enjoy a big long swing in peace and quiet. It isn't always possible though. I manage where I can. I do not see this as a luxury, this need to swing, it is a necessity for me. It is my most fulfilling stim.

I use swinging to rejuvenate myself. To refresh my mind, body and soul. I love swinging!

Ideally I would love to have my own swing that is easy to pack up in a move for when/if we move. Someday...I hope.

Don't blame my parents

Don't Blame My Parents

Don't blame my parents

For the way I am

I was born with Autism

And doing the best I can

Don't put them down

When they're doing their best

I was born with Autism

And I'm different from the rest

Don't point and stare

If I act different in the street

They have enough to deal with

And have my needs to meet

Don't laugh at their expense

If they're finding it hard to cope

Listen to their worries

And please give them hope

Don't say that you could manage

If you were wearing their shoes

It's easy to make judgement

When you've got a path to choose

Don't judge my parents

Walk in their shoes for a day

Maybe you wouldn't be so willing

To have so much to say

By Donna Woods

From here.

I read this poem today. It was shared in one of the many Autism groups I am in. I love how eloquently Donna writes.

Flapping happy!

At lunch today.

I started flapping because I was happy. Atrus had just put a big piece of chicken breast on my plate. I flapped my hands in excitement. It was a very yummy looking piece. I glanced at Atrus whilst flapping. He looked at me and laughed.
'I love that you do that because it means that you are happy.' He said.

'I do it because I'm so excited that I cannot contain myself. I'm too excited to express myself verbally.' I replied.

I love Atrus. He is awesome. Neurodiverse awesome!

Later that day...

I read Atrus the above draft blog post.
I flapped my hands in excitement again. Atrus giggled and then said, 'You look like a butterfly.'
I burst out laughing with happiness.

RIP Alex Spourdalakis

Trigger warning for murder, Ableism, abuse

Please click on the photo to go to the Facebook page for Alex's Vigil

Note: It has taken me a few days to write this as I have been so overwhelmed by the intensity of my emotions surrounding this horrific tradegy.

I read this article a few days ago. It has been shared on a number of Autism Advocacy Pages. There are more and more news articles coming out as I write, updating everyone about the murder of this innocent child, Alex. I am disgusted to think that a Mother thought it was ok to murder her son. No matter which way you look at it, it is still murder, regardless of the reasons surrounding why it happened and what lead up to it happening. I do not get why so many people have so much sympathy for the mother and caregiver when Alex lost his life at their hands without having any say. It is truly, truly horrific!

I saw the above photograph of Alex came up on my Facebook newsfeed and I cried when I first saw it. That was the first time the reality hit me of how heartbreaking the whole tragedy is. He looks so innocent and happy. It broke my heart to see him and know that he is dead. He is the innocent victim who had no choice whatsoever what happened to him. It breaks my heart to think that his own Mother thought it was ok and the only option was to kill him.  Did anyone who treated him ever try to help him communicate his needs? Or did no one think of doing that? I have often wondered that.

There are many who are saying they feel sorry for his Mother and understand why she did it. But what about Alex? How he felt? What he needed? What about his dreams for his life? What about his voice?

It feels horribly close to home for me. I am on the Spectrum. I am Autistic. I have times where I am non-verbal due to shutdown. It terrifies me to think that if I am in the wrong place at the wrong time with the wrong people that I could get treated as Alex did. What if that were me? Non-verbal. No one to understand me or even willing to try. I would be angry and frustrated. My Autistic traits would become more severe because I felt so unheard and misunderstood. I would feel less than human, in a sense. That I was just a thing, a doll.

I recently had an experience where I had to advocate for myself. It involved a misunderstanding with my family and how they supported me. I wore myself out trying to advocate for myself as they did not understand me. We had a family meeting with my Psychologist and sorted it out. Imagine if I were non-verbal. In fact there are times where I did go into shutdown and was non-verbal. How would I be treated? It truly terrifies me to think how different things would be for me if I were non-verbal all the time.

Now imagine you are Alex. You can't speak. You are in pain. No one is listening to you or attempting to even communicate with you. Now imagine how frustrated you would feel. You are treated as less than human simply because you cannot speak. It is Ableism. It is wrong. It is unfair. It is for this reason that I feel so strongly about Autism Advocacy. To prevent another Autistic child from being so brutally murdered.

I must advocate for myself, and for others like Alex. To change how the world sees us. Not as an epidemic or a crisis but as differently-abled people who do things differently, communicate differently and see the world differently. We are human first and foremost. We demand and deserve to be treated as such.

RIP Alex. My tears fall for you. My words are for you. My Advocacy is for you and many others before you who have been cruelly murdered, abused or mistreated. May we on the Spectrum make a difference with our Advocacy. You are my Spectrum brother and it hurts me to read what happened to you. 

Many will not agree with me and my views. Alex was part of my family. The spectrum family and we must look out for each other as a family. Our Spectrum brothers and sisters.

Karla from Karla's ASD page made this slide. It is so articulate.

Further reading:

The list grows longer

Culture of Misery and how it contributed to Alex Spourdalakis' death

The real Epidemic

Mother, caregiver charged with Autistic teens murder

Snapping, flipping and killing: How high stress levels, violence and even murder are privilege for normative adults

Mourning Alex Spourdalakis, seeking change

Autism Wars - articles about Alex Spourdalakis

My wibbly, wobbly rantings about the murder, yes the murder of Alex Spourdalakis

ThAutcast: Aspergers and Autism Community status about Alex Spourdalakis

When an Autistic Child is killed

RIP Alex Spourdalakis - yet another Autism murder

What about the murdered Autistic children?

The Deadly double standard

Autism biomed and the murder of Alex Spourdalakis

Family Meeting with my Psychologist

The meeting with my family, Psychologist and myself was today. It went very well. Much better than I thought it would go. My Psychologist handled the meeting very well, I thought. We recorded the session so that I can listen to it later. I think it will be very helpful for me to do this. So much was said that it was all a bit of a blur. Everyone got to have their say and voice their opinions. My psychologist explained very well about Autism and how it affects my life to my family. In particular about meltdowns, Sensory processing disorder, delayed processing disorder. My family get it now. Yay! I don't feel so alone and misunderstood in this journey of understanding myself better. It sure helps to feel understood. 

My Psychologist wrote up a plan for me to do and for my family to do, so that we can work together better.

Here is my plan that she wrote for me:

1. Brainstorm different scenarios for different variations of things that could happen and write a social story/visual plan of how I will cope with various unexpected changes.
2. Create a visual timetable - using a whiteboard or velcro board
3. Calm inside (body)
   Calm inside (home) - environment
4. Appeal Disability pension.
5. Back-up meals in the freezer and activity schedule for my son.
6. Buy or make a board for the visual time table.
7. Possibly anxiety medication?
8. Create a Code for my emotions to communicate with my family, e.g. Angry - red and then tell them on a scale from 1-10 where I am. If I am really angry, I will say I am a red 10 and they will know to leave me alone to calm down. The other emotions are: Happy, Sad, Stressed/anxious, and meltdown. I need to choose colours for the rest.
9. Develop a crisis plan that works for helping me to calm down from meltdowns.
10. Buy a CAT kit

I added the last one as I think it will be very helpful to me. My Psych showed me her CAT kit at the end of the session. I could clearly see how much of a HUGE help it will be for me and how much I need something like this. She said she has used the CAT kit for children and adults on the Spectrum that she has worked with. It is not cheap though.

I am very drained. It has been a big day. I don't have the spoons to write much more. I still need to process a lot of what has been said and figure out how to actually do this, to make it happen. Inertia often gets in the way of things happening. Life is incredibly overwhelming for me right now. I am very much a hermit and do not feel up to doing much at the moment. I need to rest and regain spoons to cope with life better.

On the positive side I have found a visual timer for myself to stop myself from hyperfocusing and getting so absorbed that I completely lose track of time and then do nothing else. It is ridiculous how easy it is for my to hyperfocus lately and how hard it is to stop. I will share a photo of it soon. I was planning to buy one from here, but DH reminded me of one we already had from MIL.

Video about the CAT kit.

I am off to do some colouring in. Yay! I am in the process my own colouring book out of free colouring pages, special paper, coloured paper and raffia.

My chew/bite necklace has arrived! I have used it. Great to use. My son likes it and has had a bite too. I have bought him his own chew/bite toy.

Blogs written by Autistics

If you are looking for blogs written by Autistics. Here is a Blog Roll list. A great place to start.

Self-harm and Autism

There are different forms of self-harm. e.g. biting, hitting oneself, cutting, head banging, eye gouging, face or head slapping, skin picking, scratching or pinching, hair pulling, hand or arm biting, cutting.

I used to be ashamed of the fact that I self-harm. I didn't even know there was a word for it until recently. I didn't understand why I did it. I just knew I had to, to cope.

I self-harm by biting my wrists. I am trying to re-direct it. It comes from my childhood when my Father berated, abused and belittled me. I was never taught how to manage my intense and overwhelming emotions. I was expected to behave at all costs, any further emotional outburst was seen as defiance which resulted in further punishment. So to cope with my intense emotions I turned to biting myself to relieve the emotional pressure so I wouldn't get punished. I wrote a blog post about how my Father tried to discipline the Autism out of me and how incredibly detrimental it has been to my mental health. So I am trying to now re-direct years of using self-harm to manage my emotions into a healthier way.

I have also slapped myself in the face (at times, not often) when I am incredibly frustrated with being misunderstood by someone else, usually my husband. It usually comes from a place of already feeling low self-esteem. We will be arguing and I will just slap myself in frustration, repeatedly, because I do not feel heard. I do not get a release from it, it is more about being misunderstood and not being able to get my words out how I need to, in order to get my point across. So I get physical and self-harm. I now realise that I was heading into shutdown which means I lose my ability to speak. I am now more accepting of this shutdown process so I do not force myself to speak when I cannot. I do not feel a need to slap myself in the face very often because I accept this process. I tell the person I am having disagreement with that I need to take break and talk about it later.

I am in the process of setting up a sensory/emotional regulation kit (I will share mine on my blog once it is set up) which includes a bite/chew necklace. I got mine from Ebay. The link I shared is just one place you can buy such a necklace. If you type into google 'Autism Aspergers chew bite necklace' a whole range of websites and online shops will come up. There is plenty of range. I am considering getting this have just bought this chew toy too. I get so much satisfaction from biting something. It is a release of pressure for me.

Further reading:

Self-injurious - From thAutcast

Autism, pain and self-injury

Fantastic Blog post series about self-harm

Anatomy of a meltdown The writer discusses about self-harm as being part of her meltdown and the release she gets from self-harm.

The high cost of censoring or why stimming is a good thing

Frustration, anger, Autism and others expectations

This blog post sums up how I feel about the world right and how my family makes me feel. They try to support and understand me, but unfortunately it does not come across that way to me. I don't have many words to write because I am so drained by all the stuff going on in my life and with my family right now. I love my family and am very grateful for the support they have given me. I fear now we are not able to understand each other very easily anymore. Especially as I am understanding myself better and how my brain works. We are at a crossroads, my family and I. We will either work this out, or go our separate ways. It is a shame it has come to this, but for my own health I cannot keep advocating for myself to people who simply do not understand me. I do not know how to explain myself any more clearly to them. I am too worn out from trying. I need to concentrate on recovering and coping better. I don't need to be constantly explaining myself to people who just do not understand me when I am already so incredibly drained. I don't need judgement when I am vulnerable. 

The quote below was shared in a Facebook group I am part of and it is very relevant to my journey. I am exhausted, experiencing Autistic burnout but I must keep standing strong and advocate for myself.

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life, but define yourself.”

― Harvey Fierstein

That is all I can manage. I feel like hiding in a hole for a week or two, but not possible in my life right now.

Autism Social Stigmas

What is a Social Stigma?

stig·ma

/ˈstigmə/

A mark of disgrace associated with a particular circumstance, quality, or person: "the stigma of mental disorder".

There is a definite social stigma about Autism. Which is unfortunate as it is very hurtful to people on the Autism Spectrum. We are people. We have feelings. We deserve respect and to be understood. We are all different, even though we identify as being on the Spectrum. It does not mean we are all the same. We are diverse within the Spectrum. We are often misunderstood, feared, hated, bullied, and even killed because we are different and those that have the advantage cannot or will not use their empathy to understand us. They want us to fit into their world and live their way. Thankfully this is very, very slowly changing, through various Autistic adult Advocates, through blogging, through Facebook groups and pages, but it is not enough. The social stigma of Autism is rampant throughout society and the media. Each time another Autistic adult is told to fit in or is misdiagnosed this attitude is encouraged and grows. Each time an Autistic child is killed (sometimes at the hands of their parents), this attitude is encouraged, grows and spreads. You get the idea. For every bit of work the ASD Advocates, bloggers, and Facebook pages do, the media and people ignorant about ASD will often counteract it with their views. Social media has become a fantastic platform for Autistic Adults to tell their stories, to try to get their voices heard over the roaring din of the Neurotypical world. Hopefully in time our voices will get louder and louder.

We need to work together to create a Neurodiverse world. A world which allows Autistics to focus on their strengths and live in a way which suits them. The world is unfortunately not suited for Autistic people. This can lead to numerous things, depression, anxiety, stress, Autistic burnout, self-harm, self-hate, suicide which is because we are feared, misunderstood and feel we are broken/defective. It is a vicious cycle, that is not easily broken. I do not have the answers. I can only share my story, my thoughts on the subject and raise awareness by being a self-Advocate. I hope in time we can say the world is finally Autism friendly and we can live in peace without fear of being bullied, feared, misunderstood or killed.

Another point which I think is incredibly important is the lack of opportunity and support for Adults on the Spectrum. We are rendered invisible because the media focuses so much on the tragedy of Autism, which feeds parents' fears about having an Autistic child. Autistic Adults are left entirely out of having a say in the media. Which is unfair and not reality. We are not invisible, we are here to stay and we have a voice.

Overall this is about Ableism, how subtle it is in our society and how it affects disabled people.

Further reading:

Neurodiversity Rewires Conventional Thinking About Brains

Neurodiversity

Walking the language highway

A poem from my youth

I found this poem I wrote in my diary 18/09/04. It really hits home.

Note: it's unedited as is. I was 20 years old.

I crave this time alone

I long for it

All to myself 

With no one to bug me

I can then think

Really think

About life

Where it's going

Time to reflect

Time to relax

Truly be me

I long for time alone

Time to think

Be free

When I'm done

Truly being alone

I emerge

Into the world

Like a

Beautiful butterfly 

Free at last 

To be totally me

Face this world again

Strong as can be

Beautiful and free

I'm totally me

Meltdowns or Tantrums? My approach to parenting

This image came up on my newsfeed on Facebook profile. I shared it on my profile and it elicited interesting discussion from a few people. The discussion has inspired a blog post. So here goes.

I believe children often have tantrums as a result of not feeling heard, listened to or respected. It's not about getting their way, so to speak. A child needs their parents to be the bigger, stronger, wiser and kinder person and step in to help their child with their big emotions. I know, I was a child once and I remember how vulnerable I felt. The reason I had meltdowns or tantrums was because I hardly ever felt listened to or respected by my parents, my Father in particular. I needed someone to step in and help me understand what my emotions were and how to deal with them. It was not about me getting my way. It was about me needing my parents to be bigger (be the adult), stronger, wiser and kind which often they weren't. They sought to discipline me to get be to stop the loud attention drawing (more so because they themselves were uncomfortable) behaviour by band-aid punishment,e.g. punitive. It did nothing to help me learn about emotion management, discussion, mutual respect and compromising. I learnt that my feelings didn't matter, that it was more important that the adults have peace and quiet. So I turned it all inwards to self-harm to cope with my intense feelings so they wouldn't come out at inappropriate times.

I do not want to raise my son how I was raised.

When my son has a tantrum or meltdown. I am there for him. I talk quietly to him. I don't try to shut him up. Yes, he has a tantrum because he wants something. Does he get it? No. I still put up boundaries but in a kind, empathetic and caring way. I show him that I am with him, that I care about his big emotions, that it is ok for him to feel them and express them. I am trying to figure out ways to teach him emotion management in healthy ways because I was never taught. I'm still learning how to manage my emotions myself. I try to show him love unconditionally no matter what he expresses or feels.

I think when a child is having a tantrum they desperately need empathy and love. They do not need harsh punitive treatment. This does not mean give them what they want. Boundaries can still be set but in a kind, caring, child friendly way.

I am not a perfect parent. I do not do this all the time but I sure try to. Because dammit I am NOT going to repeat the same abuse that was put onto me as a helpless, vulnerable child.

Meltdowns are different to tantrums definitely. However, I believe both need kind and caring support by the parent. I find that very difficult to do at times, in particular when I am low on spoons or already sensory overloaded by my son's crying/whinging. I have to manage my own triggers for various things (sensory, emotional, physical, etc). It is a real challenge for me to do those things as an Autistic parent and parent my son with what he needs. I am learning, changing, growing, gradually.

Some helpful links:

Anatomy of a meltdown

Meltdown versus tantrum - what's the difference?

Managing toddler's tantrums

Aggressive tantrums

Help for Mothers

Dr Laura Markham from Aha Parenting has some fantastic empathetic parenting articles and a free newsletter which I find very helpful. Albeit, somewhat overwhelming at times. I absorb what I can and apply the knowledge where I can. In time I will change how I parent and connect better with my son. That is my goal. To break the cycle of abuse and parent in a connected way.

A lot of parenting is owning our own trauma, and emotional reactions to our child and not projecting it onto them. This is my biggest struggle. To stop projecting my own emotional reaction onto my son. Dr Laura Markham says in one of her newsletters that our number one parenting responsibility is managing my own emotions. A challenge for us all.

So...you think you might be Autistic?

I have had a few people come to me privately since I received my diagnosis and came 'out' about being Autistic on my Facebook profile. I am always happy to help my friends and others who come to me in need to help them understand themselves better. We are all on a journey and need to help each other where and when we can. Regardless of the label that is associated with who we are. I think it is incredibly helpful to understand oneself, accept oneself, have self-awareness and work with oneself. That is the way to grow and be happy.

If I can help others understand themselves better and accept themselves then I am doing what I am meant to do and what needs doing. This is my path, I can see the way clearer now than I ever have before. So if any of my readers are thinking they might be Autistic I would like to direct you to this fantastic blog series on Adult diagnosis. I am sure it will help you in your journey of understanding yourself better. That is what is all about really, understanding yourself and hopefully accepting yourself. Forget the label and the ridiculous stigma attached to it.

Disciplining Autism

All my life I have been labelled as the 'naughty' or 'rebellious' child by my parents, in particular my Father and those in my extended family. This was severely detrimental to my mental health. I grew up thinking I was a naughty, bad person who was out to cause everyone trouble by my out of control behaviour. As I grew older and understood myself better, I tried so hard to 'behave' and not be so out of control but I often failed miserably. Since realising I am Autistic, I understand that it is not about my being rebellious or out of control. It is very different. It is about sensory issues, emotional overload, delayed processing, being low on spoons or tokens, social situations, having a social hangover, unpredictable situations, etc. I now have far more self-awareness and am able to work with myself rather than against. This is greatly helping me to improve and heal from my traumatic past.

I urge parents of autistic children, please do not ever try to discipline the Autism out of your child. Work with your child, listen to your child, learn their language, try to understand them and be their Advocate. Please do not try to make them fit into the NT world. Make their (and yours) world Autism friendly.

Some helpful places to start:

• Mama Be Good
• Karla's ASD Page
• ThAutcast
• Peaceful Parenting a child on the Autism Spectrum
• Seek out Adults on the spectrum to be a Mentor to your Autistic child. We are around.