"Sensory needs, overwhelm, fear, anger and love." What it's like in an all-autistic family.

My daughter Stephanie and I have been watching Frozen, and as always, I'm looking for hidden meanings in the story. I love to look at movies and songs and apply them to my daily life.

Our household is all-autistic. We all have diagnoses of Autism. I see Elsa's superpower of ice as being similar to the Autistic superpowers that we all possess. We don't have the power to freeze things, but our overzealous emotion can hurt those we care about. 

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Autism is defined by the Oxford Dictionary as "a developmental disorder of variable severity that is characterised by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour."

What this means for us, in my family, is that we experience external stimuli as blasts of information. When we are out in public, the smells, the sights, the sounds and the people can all merge together and become completely overwhelming.

In order to regulate, we can focus on repetitive behaviours to deal with the meltdown that is occurring in our brain because of the overload of information we've received. We can go into a shutdown, or we can go into aggression because we are afraid of all the information hitting us at once. I find this really hard sometimes, because my kids and I all receive and process information in a different way.  

I might regulate by putting loud music on, a song that is comforting to me. But, this music might overwhelm my son, who then has to repeat a phrase, which annoys my daughter, which makes her need to complete a regulatory behaviour of hitting him, which makes him hit back, which makes me cross and overwhelms the song that I'm playing. 

Our household is a constant balance of sensory needs, overwhelm, fear, anger and love.  

Nobody's processing is quite the same with autism, so some of my sensory processing is avoiding, meaning I can't stand when there is too much aural information, but my proprioceptive system is seeking, meaning that I have a poor sense of where I am in the world.

This is evidenced by me being clumsy, falling down or stumbling a lot, not being able to tell my left and right easily, becoming disoriented by verbal directions (if you start telling me how to find your house, please stop, because I'm just going to look it up on Google Maps), I like physical contact (from the right people) and tight hugs. 

My son is the opposite. He asked me when he was eight to stop hugging him as he doesn't like the feeling and would prefer people to keep their distance from him. 

Deb and her son. Image: Supplied. 

It's incredibly complex and even though I have been able to identify my sensory needs, they can vary from day to day, depending on my emotions, which are difficult to regulate, because I have a brain that likes patterns and routine, but can also get overwhelmed by too much routine and need to not do the thing that helped me yesterday.

Autism is hard to be around sometimes, I'm going to be honest. It leads to a lot of misunderstandings because people don't follow the social scripts that I've learned in childhood. I didn't understand a lot of the variations of social interaction, and tended to learn the rules of communication, and try to follow them dogmatically, unless I don't feel like it, and then I expect people to understand me.

I presume that you understand what I'm thinking because I know what I'm thinking and you're standing next to me. 

I understand when Stephanie grabs a toy from a friend without asking, because her autism presumes that because someone is a friend, they automatically understand her every waking thought and feeling. 

A lot of our difficulties when we make friends, interact with people, or try to have romantic relationships, are around the fact that we have to learn a lot of this stuff systematically, instead of having an innate understanding of the intricacies of human relations.

Neurotypical people (I call em 'normies' sometimes) may understand that their friends might not know what they're thinking and that they will need to explain themselves. They will understand that another person is a separate entity and not be offended or angry when communication breakdowns occur.

When I first started learning about autism, I didn't understand that people may have not had the same experience as me. From working with my sponsor, I understand that sometimes I ask questions like "hey, do you ever do this?", and unload a massively personal experience onto a complete stranger. 

I will presume that the other person has experienced this exact conundrum, and has been waiting for the day when I would bring my considerable verbiage to the informal conversation that we are having at Riverside Plaza in the soft play area. 

I'm expecting them to say "YES! YOU ARE CORRECT! OUR EXPERIENCES ARE SO SAME! I'VE BEEN WAITING ALL MY LIFE FOR SOMEONE TO PROVIDE THE WORDS TO INTERPRET MY EXPERIENCE AND HERE YOU ARE!". 

Sometimes, in truth, I do have this experience. I connect with a mum or a shopkeeper or a complete stranger and we have very affirming conversations about deep thoughts. I get lucky.  

But other times, ooooh boy. I can see the person visibly recoil from my logorrhoea (it means talking a lot) around a personal experience such as Post Natal Depression, addiction, parenting, divorce, bowel movements, whatever. 

And they think, Ok crazy... I'm just here to play with my kid and I need you to zip it.  

But, with all this glorious misunderstanding and miscommunication, comes fear, and anger. As an autistic person, and as a bullied autistic teen who went through a couple of different high schools because I was different, and they knew it, and I didn't know how to be the same, I fear being WRONG. I fear being MISUNDERSTOOD. And I react in a really intense way when I feel like people are deliberately misunderstanding me or making me feel wrong. And my kids do, too. And that can be really hard to witness.  

Steph has intense reactions about being misunderstood by me, because I am her safe person and she believes that we are connected. When she says or gestures something that I don't understand, she reacts in anger. 

This is incredibly triggering for me, because that sets off the fear in me that she thinks I am WRONG, that she is MISUNDERSTANDING me, that she thinks my attempts to be a good parent are WRONG.

It can be incredibly hard to stay calm with her and help her communicate to me what she needs. In a world where we are so often confused by our intense reactions to stimuli and the behaviour of others, it is really hard to trust others.

Deb and her daughter. Image: Supplied. 

So, the story of Elsa always hits me in the feels. She has these incredibly beautiful powers and just wants to be close to others, but she knows that the intensity of them has the power to hurt those close to her. 

She is playing with her sister, but because of her superpowers, she accidentally hits her sister and hurts her. She's given the advice to "conceal, don't feel". And she shuts herself away because she believes that her intense powers will hurt those close to her. She won't play with her sister anymore in case she hurts her sister. She feels misunderstood. 

I have felt this way. That I need to hide myself from others, because in the past, my fear and anger have hurt those I loved.

Then, her powers are seen and people are disgusted; they are afraid of her and her differences. She runs away and glories in the power of her iciness, she constructs a massive ice palace, but she doesn't realise that being so frozen is hurting her community and those she loves.

There is very much the desire as someone whose self and whose children struggle with their emotions, to either be one extreme or the other. To either shut down the autism, or to turn the power up on it. To conceal all my differences and end up in a meltdown, or to live at the mercy of them and create a massive ice palace around me where I hurt those I love because I'm self destructive and frozen.  

It hurts sometimes to be so powerful, I want to stop feeling everything so much and I can seek release in destructive ways. I can close down and shut off. And shut my kids off. It hurts those who love me because I shut them out.

When someone sees my or my children's anger and fear, and stops and understands, helps me see the good in me and them; when I am triggered by my children's anger, but I stop and turn and love them - that's when I feel like I am autistic and proud. When I am understood by others. When I am told by others that I am fierce, charismatic, have presence, am powerful, am kind, caring and generous. 

And so it particularly is, when I see my beautiful daughter struggling with the feelings that I have struggled with all my life. The fear of being misunderstood, of being wrong, of not fitting in. I see that when I love and accept her unconditionally, I am giving myself the gift of loving and accepting myself unconditionally.

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In the Frozen book that we have, it says, "Suddenly, Elsa realised that love was the force that could control her powers. She raised her arms, and the ice and show that covered Arendelle melted away".

When I am understood by another autism mum for crying tears of grief, because I tried to take Steph to a park, because I desperately wanted connection with another adult, and she is unable to deal with the sensory overload, and I can't have a coffee and sit there and talk while our kids play... when I am heard and understood and listened to, and not made to feel wrong, the ice in my heart melts. I am tempered with love and I am able to continue to manage my autistic superpowers to help my kids make sense of the world. 

When I feel wrong and confused and overwhelmed by emotion, when I reach out to my friends in recovery who have similar confusing strong emotions, and I see the ways in which they are trying to change their lives, and live neither shut away or at the mercy of their feelings, I feel understood, thawed by love, and capable of trying again to live my life with joy and compassion for myself.

I was so terrified of having a daughter, because all my life I felt wrong and misunderstood. I thought she would be the same; I thought I would destroy her. So, to have a child who consistently feels that way, yet is amazing and beautiful, and courageous and kind and gentle, for her to be all those things at once, I see that I am amazing and beautiful and powerful. 

I see that I have struggled all my life to be normal, and that's never going to happen, because I am a magnificent snow queen with autistic super powers. 

And if I wasn't me, I couldn't understand and interpret the world for my little snow princess.

I couldn't explain my thoughts and feelings to clinicians and give them insight into the world of autism. 

I couldn't keep on wiping away my tears and showing up for my little family, even though it is so tempting to freeze everything and hide away from the world. 

I know that I want and am worthy of giving and receiving love.

This post originally appeared on Deb’s blog and has been republished with full permission.

Feature image: Supplied.