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.

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.

Me:

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.

Sibling:

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.

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.

Sibling:
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?

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

Neither of us understood each other

Sibling:

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!!

Me:
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.

Sibling:

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

A friend's phone call today

One of my cool long term Aspie friends just shared this little story in a group. I asked if I could share it here and she said yes! I am so inspired by it. She has a blog too. Check it out. It is her story of a late diagnosis of Aspergers and her journey to better understanding herself.


Phone call just before: guy doing the hard sell trying to get me to buy some add on to my phone bill to help me save money.
push. push. push.
I tried several times to tell him that I was going to think about it, he just kept pushing.
Finally, I said "look, I have Aspergers and sensory processing disorder. I actually can't make snap decisions on the phone. I am going to think about it, and I'll call you back."

"oh" silence from his end. then. "should I call you back around this time tomorrow" (not a question, he was already penning my name in his 'call back and bug the ever living daylights out of' book.

"NO. I told you, *I* will call back, WHEN I have made a decision"
and I hung up.

feeling so good :)

A second comment she added after.

"I know that if I make a decision on the spot it's not a good idea, especially with phone calls. and if I'm pushed into something I panic and worry that its the wrong decision. I need to make informed decisions!"

Her response to me:

"I felt so... liberated and I was just a clap short of flapping."

Reading about stories like this makes my heart sing. I love it!

Mimicking animals

Do you enjoy mimicking animals?

I like to mimic animals. I have in my life time mimicked cats, dogs, chooks, cows, kookaburras, whales, wolves, and horses. I mostly identify with a cat though. I like to talk cat, i.e. Meow, purr, growl, hiss as ways of expression. I asked my Facebook friends and people who follow my Facebook page about their stories of mimicking animals and what animals they mimicked. I got some great responses. My blog is inspired by another AS Mother asking in the group about whether anyone else and their family mimicked animals. It sparked interesting responses and I remembered a particularly funny story of when I mimicked a Kookaburra. I mimicked a kookaburra so well that my mum thought there was a kookaburra in the backyard. We lived in NZ! She got all excited for a second until I told her it was me. It was quite funny! To add context to that story we had just come back from visiting our relatives in Australia and I wanted to have something to remember the trip by.

I also remember longing to have a tail as a child. I used to use ribbons and whatever else I could find to make myself a tail. I had so much fun pretending to be a cat and having a tail. I am tempted to buy or make myself a tail just because I can. I want to embrace my inner animal and child.

I have always felt a connection to animals and love trying to connect with them in their language on their terms. 

The other night I was taking the a bag of rubbish to the wheelie bin and there was a cat on the driveway. It froze when it saw me. I started meowing at the cat while I put the rubbish in the bin. I could see the cat visibly relax as if to say, 'this is a safe person, they get me.' It was so cute!

Here are some of my friend's responses:

"My daughter has always done most of the behaviors mentioned. When she was little she would put anything long down the back of her pants to make a tail. My grandma sewed tails for her of many animal prints to play with. She also has a very realistic dog bark and wolf howl. Great for creating ambiance on Halloween! We regularly chicken cluck to each other."

"I made a noise like a seal and flapped my 'flippers' together in kindy class one day and my teacher made me do it all recess as a punishment!"

"My cat and I have long conversations in her language hahaha!"

"As a baby I purred like a kitten and crawled around enough that my Dad gave me the nickname Kitten.

As a kid, I thought it was neat to mimic sea gulls especially. 

My kids like to mimic animal noises also. My middle child does it the most correctly and not how it is written, for instance a horse does not go "neigh" and a pig does not "oink"."

"I have upset a few dogs by barking at them. Surreptitiously, I have barked at dogs in a car next to me at traffic lights, and turned their car into pandemonium ... very funny to see the driver's frustration and confusion!"

"I cheep like a bird a lot lol. I'll ask my partner if there's any animal noises I'm unaware of. Both of my girls regress into animal personas when they're stressed or threatened. Iris mostly becomes a cat and Lou changes between many different animals."

"I used to bark a lot as a kid. Today I generally... meow."

"I also use (and always have used) the more threatening dog and cat sounds. Hissing, growling etc."

"Yes I do. When he was little, my son told me off for mewing back at the cat: 'Stop it, Mummy! You must never miaow at cats! Or woof at dogs!' And crows, incidentally, are just asking to be cawed at."

"I do it off the wall out of nowhere!!! Chicken, monkey, dog, cat, cow and crow."

"My mom said that when I was little, I used to hide under the table and bark when a babysitter came over. And when I was in college and intoxicated, I would start mooing. Come to think of it, I'm physically incapable of passing a field of cattle without mooing even while sober (from the safety of my own vehicle so people don't think I'm crazy - LOL). And yeah, I meow at my cats sometimes."

"I would often try to communicate with my cats by mimicking them, and I think I figured out a few of their common signals, I could usually get the expected reaction. To communicate with people though? I would his at people to get them to back off, even through high school. I'm pretty sure it only worked because I weirded them out, but it was still very successful!"

"I've always made animal sounds - hens, roosters, dogs (especially howling and whimpering) neighing, bleating, mooing and I speak to my cat in "trill" language and we have quite long conversations. Howling at the moon was one of my favorite things! My mum even had a black cat suit made for my 10th birthday (it doubled as a wolf costume). I was a country tomboy and had to make up my own amusement."

I am tempted to get for myself:

Cat's ears

A cat's tail

Further reading:

Wrong Planet discussion on animal mimicking and Autism

Do Animals and People with Autism Have True Consciousness? by Temple Grandin
This article kind of related and I thought it looked interesting.

Who am I, really?

I read this blog post this morning. It was shared in the AS Mothers group that I help run. I was amazed at how much I related to it.

I really liked this quote:

"If you look at famous men and women who display autistic traits, our perceptions of them are often completely different. Such men are viewed as geniuses and leaders, whereas the women are viewed as unfriendly loners with mental health problems."

Throughout my life I have tried on many different guises trying to figure out what I like, what it's like to be someone else and to learn how to socialise properly as it really does not come naturally to me. My natural instinct is to stay at home, living at a pace which suits me, following my normal routine, writing, being creative, basically a simple, predictable life. But I do like to try on personas and pretend to be different people. Not to mention that when I am in social situations my natural tendency is to either be selectively mute or to talk way too much and majorly overshare. I have since discovered that talking is a stim for me. A way of keeping myself calm to stop myself from freaking out too much about the fact that I am actually socialising. 

I remember in my teens going through various stages of trying out different styles of clothing, speaking, walking, dressing, facial expressions, poses. All in an attempt to figure out what I liked, who I was and how to hold my body/face. I have since realised that all the posing I did in front the mirror and all the self-portraits I have taken of myself are in fact me learning how my body feels while I hold myself in different poses and do different facial expressions. Otherwise, I have a fairly blank face and don't show much emotion on my face unless I feel an intense emotion. I still enjoy a self-portrait camera session. To me, it is all about experimentation, learning how poses feel and how my face feels. It is not vanity. Not at all. I also like creating fun and creative portraits to look back on laugh at myself. It is all in the name of art and learning.

I remember watching movies and closely studying characters I identified with and trying to imitate them. I would even imitate the accents of these characters. I would do the same with friends and various people in my life. I would observe them and imitate them. I often found myself terribly confused because I had a strong sense of self but found myself naturally copying people. Even though I didn't want to, I still copied them. I now realise it came from a need to learn how to cope in the social world as I really have no idea how to adeptly socialise. This does not mean I was losing who I was and not a strong personality. Not at all. I am still my own person with my own uniqueness.

I like playing dress up. I like acting. It is a lot of fun. Even though I have never done any formal acting. I feel drawn to acting. To putting on a performance. To pretending to be someone I am not. I have a huge wardrobe of fun, crazy dress up clothes which I rarely wear. I like collecting unique clothes and fashions. I keep telling myself, 'one day I will wear them'. But then I don't. The occasion is never quite right. I am getting the place where I am going to start wearing them when I go out. It is for this reason my husband and I are hoping to get involved with the local Medieval re-enactment community. So I can dress up for a reason, learn history, be someone else and have fun! There is great power in acting and being able to act out parts of oneself that you wouldn't normally do because your real self is too scared to.

This is one of my good Aspie friend's response to the blog post:

"I basically relate really well to the whole thing. I have always been a mimicker and have actually struggled a lot trying to figure out what my own "self" identity is because I tend to mimic others so much.

I tend not to worry about it so much anymore, and just see my identity as being something that I'm allowed to change if I feel like it, and I'm allowed to be sort of a magpie and mimic when I feel like it or not if I don't feel like it.

Sometimes the mimicking can actually be very helpful in that it can help me find out things I really like and wouldn't have known that I liked otherwise."

Further reading:

The Male/Female divide

The Misdiagnosis of women on the Autism Spectrum: A story shared

Aspergers Traits: Females on the Spectrum

10 Myths about Females with Aspergers

Riding the intense emotion wave

When I feel an emotion from being triggered by something, it is intense, strong and incredibly overwhelming. I cannot think of anything else. The feeling fills my entire body and my mind. It is hard to focus on anything else, but my feelings. I cannot see a way out feeling that way. My intense feelings consume my entire being. I can easily end up in a downward spiral of catastrophic thinking and depression.

It's partly catastrophic thinking and partly because I feel things so intensely that I feel it will never end. My psychologist has been helping me to understand that emotions are like waves. They reach a peak of intensity and then it slowly eases. I am learning to practice mindfulness where I observe my thoughts, acknowledge them, but don't allow them to take hold. I focus on my breath, my feelings and thoughts. I have started saying to myself 'I love and accept myself unconditionally in this moment.' I have found the moments of intense emotion pass much quicker and I do not spiral into a depressive episode when I do put these things into practice. My psychologist suggested emotion surfing which I have tried and I am still putting into practice. It is a bit of a challenge for me not to react to things said to me. I want to learn to be more in control of my emotions and not hurt others without meaning to.

Prior to this I would fall into a depressed heap unable to get out of the emotional pit I had dug for myself. I would beat myself up for feeling this way, for acting the way I did, for not being able to manage my emotions better like others appeared to. I did not understand how my brain worked so I could not work with myself. Once I began to understand myself better through Autistic eyes I began to feel peace, love and acceptance for myself. The self-hate began to lose it's power over me and I have been able to move forward. I still do not manage my emotions as well as I would like to but I am setting up a strong foundation that in time will help me to do so.

Edit:

I have since been made aware of the fact that what I am learning and practising is called Dialetical Behaviour Therapy (DBT). 

Blogs written by Autistics

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