Wednesday, 12 June 2013

Hope, understanding and a new path in my family

I added one of my siblings and parent to a group called 'Ask me, I'm Autistic' on Facebook in an effort to help them understand me better and bridge the gap of misunderstanding.

My sibling asked this question:

"I am wondering as a family member who is trying to support and understand her sister better, I am wondering what ways to go about this? It seems what I say is always the wrong thing and I hate that because I very much want to support my sister and it breaks my heart to see her so upset and overwhelmed. My sister is an adult who has just recently been diagnosed with Aspergers. I also struggle with being at the end of her venting or outbursts. So what I'm asking is how can I be more supportive and understanding?"

Some of the responses were powerful and incredibly helpful. Tania Melnyczuk, who responded offered much insight into meltdowns.

Here are her responses

"The venting or outbursts are probably meltdowns. It is important to understand the difference between an autistic meltdown and the controlled actions of someone who is behaving badly deliberately. Most aspies don't even know what happens in their own brains during a meltdown, they don't see it coming and they don't know how to prevent one. By understanding how it works in the brain, we can deal with meltdowns more effectively. Sensory overload is also often (but not always a factor). It is a vicious cycle. If you reduce the sensory stress, meltdowns are less likely to occur. Exercise and sleep are important in improving sensory tolerance and meltdown resistance. The way things happen in the brain make it impossible for any normal autistic person to regain self-control in the middle of a meltdown. That is why YOU need to be the calm one, because a person who is having a meltdown cannot just snap out of it. You need to be GENUINELY calm, because an autistic person can sense your tension, and it makes the meltdown worse if they know they are upsetting you because they panic about your reaction, knowing they have no way of stopping."

My sibling then responded with this:

"Thank you. It has definitely helped. My sister often says we don't understand her which I know we don't so this has helped to give a little insight. I understand the meltdowns but what I don't get is: is it ok to excuse the behaviour because of a meltdown or vent? So it's ok for them to carry on and abuse you because they are having a meltdown/vent? It's a good idea to remain calm, sometimes thought its over text messages. What do you suggest I do then? Ignore it until she calms down?"

Tania responded with this:

"I am going to give you a partial answer and at this stage it is still overly simplistic. I will answer in a more nuanced way later because it is not a simple matter. What works well for one does not work exactly the same for the other but here is a general rule: Do not fight back. Be calm and caring as though she were not being nasty towards you but crying in your arms about something which is not related to you. She is not in control of what she is doing and her IQ in that moment is very low. She is in that moment a mentally handicapped intellectually disabled person whose brain has gone into an anxious crazy spin, telling her she is being attacked and causing her to respond in a crazy way with university vocabulary which she learned before she got this temporary brain damage. She desperately needs to know that you have what it takes to not be afraid, not be offended, not be unsympathetic.

To respond in the manner that she is behaving would most likely be an act of will on your part. You can choose your own words and actions. She cannot choose to stop. She is out of control. Her responsibility is to learn how to prevent meltdowns, how to see them coming, how to apologise afterwards, and mostly, how to become a morally exquisite person, the kind of person who is so good and so holy that even if her brain is scrambled and the fight and flight response has been triggered, she will be unable to behave in any manner other than that of a saint. That is the only way she will be able to improve this.

Normal people can get away with moral mediocrity because they have control. People who cannot control themselves have no choice but to fill themselves up with love and righteousness and goodness, because it is the only way to ensure that what comes out of them when they are not in control is godly. 'Good enough' can't carry you where you need to go if you're autistic. I know that it probably sounds like I am being sarcastic, but it is actually just a pragmatic reality. Until she has developed that saintlike character, you are just gonna have to love and forgive her when she acts that way because she does not do it on purpose. A day or so later if she is not in a constant state of anxiety, you can check with her how much of it she actually meant or how she really meant it. If she is able to respond calmly and if you are able to distance yourself from the hurt that you feel. My best friend has been through what you go through when she does that and the emotional strain has been immense for him because he feels attacked and blamed."

My sibling responded with this:

"Thank you, that is just beautiful how you put it! As I was reading it I pictured my sister being the one crying in my arms. I really like the picture you painted because that is exactly what needs to happen. So thank you! I am going to pass some of these comments onto my other family members I feel that these comments have been beneficial and I can try and put them into action."

My sibling has emailed out these two statements to my husband and other members of my family. I think they are starting to understand me. I cannot describe the joy I feel inside after reading this. But...there is more to the story. Which brings tears to my eyes everytime I read it.
Just this evening my sibling and I were texting each other regarding the horrific tragedy regarding Alex Spourdalakis which I am in the process of blogging about.

This is some of our conversation because it did turn into a discussion about Autism Advocacy and how strongly I feel about standing up for those who are different and disabled. Those who do not have a voice. 

It is as follows.

I'm glad that Tania has been able to help you understand. I am also incredibly grateful about the fact that you are willing to learn and understand me better. Thank you! I really appreciate it. It means a lot. I love you.

I do want to understand you. All of us have been misunderstanding you your whole life and didn't know how to reach u and thought we were trying to do the right things. I'm sorry for all the other times that I have been misunderstanding to you. I know that it just made the situations worse! I know we still have a lot to learn but I am hoping I can apply some of these things that Tania spoke about the article you gave me.

Thank you. Reading that makes me smile. Yes everyone has misunderstood me my whole life and it is only now that I am starting to understand myself. Which has made it very hard to explain why I am the way I am to others.

I just feel bad for all the times I got upset with you and yelled at you when we were both frustrated. So I'm sorry and I hope you can forgive me pls?

It's ok. I forgave you long ago. Every time.

Neither of us understood each other


I'm sure it would have been even more difficult for you. I always felt for you when ppl were being mean but I didn't know what to do or say.

Thanks I appreciate that! I have forgiven you too!!

We all did our best with what we knew.

It's the past. I'm not going to get upset over it. We are starting a new journey of understanding as a family now so things will be different.


Yes we are, of building bridges and mending hurts from the past!


  1. Thank you! Reading some of your posts are helping me to come to understand my brother (diagnosed Aspergers, dyspraxic, dyslexic as an adult)more xx

    1. Hi Amy, you're most welcome! Very glad to hear that my blog is helping you to understand your brother better. It's tough being diagnosed as an adult. Your brother would have a lot of stuff going on in his head as he tries to understand himself better. I know I did and still do. Which is why I write. Is he part of any Aspergers Facebook groups? Or any Aspergers groups? I've found Aspergers groups so helpful in learning to understand myself better so that I can articulate what is going on for me.


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