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.

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”.

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.