30 Days of Autism Acceptance: Days 16, 17

I seem unable to stick to the schedule so here’s a double bill to make up for that.

Day 16: Work/School

I don’t work. Not anymore. I’m physically and mentally not capable anymore. When I did work, I threw myself 110% into it, which just led to burnout.

My best job was teaching English to foreign students. I somehow was able to relate to my students in ways the other teachers couldn’t. Or so they said. Anyway, I really enjoyed it and do think I have a flair for teaching.

My worst job was when I ran the kitchen in the cafe myself and my husband owned. It was a very high-pressure job and quite physical and was really didn’t suit me.

School never really suited me either. Academically I was gifted, so I was bored and unmotivated. Socially I was clueless so got bullied. I just don’t think school suits most autistic people.

Day 17: Accomodations

I feel if I’d had accomodations for the two areas above (work and school) I’d have done so much better with them. I never know what accommodations to ask for though, it’s a matter of trial and error I guess. Some accommodations can be so simple and yet help so much. For example, when I was teaching I was able to sit down whenever I felt like it. This wasn’t a formal accommodation but simply something teachers take for granted. But if I were to ever work again I’d ask for a chair to always be available. Simply because I faint if I stand up for too long. Though that’s due to EDS stuff and not autism. Other things I’d ask for is that nobody wear strong perfume or aftershave. Dimmable lights are very useful too. As is being told in advance of any schedule changes. What sort of accommodations help you? I’d love to have a list to look at and get ideas from.

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30 Days of Autism Acceptance: Day 15

Well, I’m all caught up and back on track so will try to do one post a day per the schedule from now on.

Day 15: Everyone should know…

It goes without saying (I should hope) that everyone should know that autistic people are human. We have the same hopes and fears, the same needs, the same Human Rights as all humans. We are not less than, we are not greater than, we are just different but equal. A parallel wavelength.

30 Days of Autism Acceptance: Days 12, 13, 14

Day 12: Favourite Autism Charity

Tbh I don’t have a favourite autism charity. I don’t really know enough about most of them to form an opinion.

In Ireland, AsIAm is now seen as “the” national autism charity. And while it does a lot of good things, it falls short on things like condemning ABA. In fact, this is the area where most autism charities fall short. Give me a charity that condemns ABA and other autism “treatments” and that’s a charity I can get behind.

My local charity is not quite at that stage yet. But are moving in the right direction. For example, they are having a “Walk in Gold” fundraising event at the end of the month. Which means they’ve moved away from Blue to Gold, which is great.

I suppose I just have really high standards for charities and the one I would pick as my “favourite” would be one I’d start myself!

Day 13: Family

When I talk about family, I don’t mean my “FOO” (Family of Origin). That’s a whole can of worms I’m not going to get into now. What I mean by family is my husband and children.

In my family, we are all neurodivergent, whether formally diagnosed as such or not. And we mostly get along, we mostly “get” each other. My family are my world. I would be lost without them.

I think family can be extra important to autistic people. We have trouble making friends and socialising so our families are often the only support we have. That’s why it makes me so sad when autistic people report having toxic family members. And that makes me appreciate my family even more.

Day 14: Routine

All autistic people love routine, right?! Well, not exactly. I’d argue that all humans like a certain amount of routine to feel secure in the world, and sometimes we need a bit of extra routine to make up for our world being so insecure.

I would also argue that routine is best when it’s self-determined. Routine imposed on us by others is never good. Non-autistic people don’t always get that memo, and they often try to impose a routine on us “for our own good” but that’s not good for us.

Also, if you’re going to change our routine, please please give us lots of notice! No, it’s not “character building” if you don’t. Last minute changes to routine are distressing to everyone and learning to tolerate them can be very difficult. Especially since stress is counter productive to learning. A better way to deal with changes in routine is to discuss hypothetical changes when we are calm and able to listen. For example “if it’s raining then maybe the event will be cancelled, and if that happens then …”. Again, doing this well in advance really helps.

30 Days of Autism Acceptance: Days 8,9,10,11

Day 8: Favourite Autistic Blog

This is quite a difficult one as there are so many great blogs to choose from it’s impossible to narrow it down to just one. So, please bear in mind that my choice will change frequently, maybe even daily. But, right now, in the moment I am writing this, my favourite autistic blog is The Autistic Advocate .

Day 9: Favourite Autistic-owned Business

My favourite autistic-owned business, right now, is Konfident Kidz . It is owned by Irishwoman Evaleen Whelton. The business consists mainly of classes for children, such as drama and social skills, as well as autism-specific classes. These are not your typical “change the autistic kids behaviour” social skills classes, but more designed to increase the autistic children’s self confidence and self advocacy. While having fun and making friends.

Disclaimer: I haven’t actually used the business myself as the kids classes don’t run in Galway (yet), though she is running a class for parents and professionals here soon (I think). Not sure if I’ll attend it as it’s mainly for non-autistics to learn about autistic ways of being. But maybe I’ll go along just to check it out.

I really wish Konfident Kidz classes and camps were available nationwide as I think autistic children and people who care about them would benefit greatly.

Day 10: Sensory Life

All life is sensory. I think most people don’t think about how their senses effect everything to do with living their lives, unless of course their sensory reactions are different to the norm, as is the case for a lot of autistics. I used to think I didn’t have too many sensory issues, but that’s because I assumed my reactions were normal. But now that I pay more attention I realise I’m greatly effected by noise, light, temperature and smells. There’s places that are guaranteed to give me headaches. People wearing a lot of perfume will give me icky vibes. I can’t wear certain clothes due to their textures. I suffer from misophonia. I cannot bear rollercoasters.

On the other hand, I delight in certain sensory sensations. Soft fabrics send me into joyous rapture. Dimmed lighting makes me calm. I’ve been told I’d be a great sommelier.

My sensory life brings me both pain and pleasure.

Day 11: Stims

I wrote about Stims here , where I talk about how I have so many Stims I never realised we’re Stims. That post will do for now as I’m a bit tired today.

30 Days of Autism Acceptance: Days 4,5,6,7

I haven’t kept up with this challenge as I’ve been away on holidays and spent most of my time offline. So now I’m going to catch up by doing a few days at a time.

Day 4: Reactions to Coming Out

I haven’t really “come out” in a lot of areas of life. But I’m gradually expanding the areas in which I’m doing so. I suppose I first came out to my husband, who was not really surprised and is very supportive. I then mentioned it to a select few friends. Most of whom were supportive but one of them said I was “using autism as an excuse for being a shitty friend”. We are no longer friends. I told my mother and my sisters. I haven’t told my brother to his face but that’s more because I rarely talk to him.

I then went along to an autistic group here in Galway. They were obviously all supportive. Then there was the AuSome Conference last February, where I made no secret of being autistic. And I added some of the friends I made there to my Facebook but didn’t make a big deal of it.

Then a few weeks ago I read this piece by The Autistic Advocate and was so moved by it I spontaneously decided to “come out” on FB. Now, I rarely use FB and have few friends there besides some one or two from childhood/university, close family such as cousins and aunts/uncles, and a few recent additions of autistic friends. And I should have predicted it but the only people who responded, either with “likes” and/or comments, were people who already knew. None of my family members responded. I don’t know if it’s because it didn’t come up on their timeline as I haven’t interacted with them in years, or if they had reasons for not responding. Either way, I don’t really care. I’m still glad I did it.

As to coming out to my GP, other medical professionals, my kids’ school staff, other people in general… I’m not sure I’ll ever do that unless I absolutely have to. Which is quite sad really but that’s the reality of the situation.

Day 5: Special Interests:

Like a lot of autistic people, my special interests have changed over time.

Astrology, Enneagram, Ayurveda, CFS, Fibromyalgia, Ehlers Danlos, Autism… The exact interest might have changed but the common thread in all of these is trying to get to figure myself out better. So I guess these would be classed as “self-knowledge”.

Botany. Zoology. Ecology. Learning scientific names off by heart. Reading scientific papers (which overlaps with some of the subjects that fall under “self-knowledge”) Reading in general. I don’t remember learning to read. It’s just something I have done my whole life. And when, as happens when I’m going though burnout, I can’t read, I feel like a huge part of myself is missing.

Day 6: Supports and Appreciation

I’m not sure what this title means or why supports should go alongside appreciation. In any case, I’m not sure what supports to write about. I don’t have too much in the way of supports. I have my husband, who is my rock and steers me clear of trouble. I have my kids who love me no matter what. And I have one or two friends and also I go to a local monthly autistic meet-up. And I have this blog, which I find vital to support my mental health.

As for appreciation. Well, I appreciate the autistic community worldwide. I appreciate my husband and children. I appreciate my friends. And I think all of those people appreciate me back.

Day 7: The Autistic Community

By this I mean the community of autistic people worldwide. I don’t mean non-autistic allies or those non-autistic people who consider themselves part of “The Autism Community”. The same way a White person cannot be part of the Black Community and a straight person cannot be part of the LGBTQ community.

The Autistic Community is by far the best place to go to learn about autism. You can find us online, through FB, Twitter, blogs etc (search for #ActuallyAutistic) or through our books or in person. Not everyone in The Autistic Community is on the same page. We don’t always get along. There can be plenty of in-fighting. But on the whole we are a welcoming bunch who just want to help. And most of us have a common goal of fighting for Autistic Human Rights.

Autistics of Ireland: Evaleen Whelton

Q1: Describe yourself.

A1: I’m a working mum who runs her own business. I’ve worked for myself since I finished college. I tried working for other people but I much prefer being my own boss and being in charge of my own environment! I studied drama from a young age and also studied commerce. I am happily married to a very supportive husband Colm and have a beautiful little girl who’s nearly 6. I am hugely passionate about children’s rights and don’t believe in treating them as adults in training, they are people in their own right and sometimes adults forget that. They have their own journeys and we need to respect that far more. I also advocate for autistic rights and put a lot of energy into dissolving the harmful myths and nonsense that has been out out there about autistic people. I think educating people is how we will achieve equality. It’s a pity we have been put in a position where we, the oppressed, have to educate the oppressors but that seems to be the pattern in human history and one we seem unable to learn from. I recently organised Ireland’s first ever all-autistic conference and intend to make it an annual event. I share a lot of thoughts and articles on https://www.facebook.com/ausomecork/

Q2: How and when did you realise you were autistic.

A1: I made the wonderful discovery I was autistic 5 years ago at 37. I think we are all different anyway so I never had that feeling of being “different” as such, more that I knew other people behaved strangely! I think I was lucky to have neurodivergent friends throughout my life. It was about a year after I had my little girl that I was diagnosed. When I look back now, I can see really clearly that the difficulties I was having then was because I was masking so heavily. Instead of embracing this new chapter in my life I was constantly worrying about how to play this new role. I put myself under huge stress to be the perfect mom. Everything had to be perfect. I was ironing her babygros, I’d change her clothes 3-4 times a day. I became obsessed about what she was wearing, the house had to be perfect all the time. I didn’t take much time off and went back to work when she was 9 weeks old. That was obviously added pressure that a new mom doesn’t need. For a while I thought it was bad planning or a naive approach but now I see that was also part of the mask. I had to be superhuman, I had to be the mom who could juggle everything and put massive pressure on myself to do so. I had held myself to ridiculous standard for most of my life, trying to become this perfect person so I would be accepted. Even writing this now makes me feel sad, not just for me, but for other autistic women who are doing the same thing. We can be very hard on ourselves. Luckily I have stopped masking. I’ve realised that no one else is prefect and that these people I wanted to accept me don’t really exist anyway!

Q3: What advice would you give your childhood self.  

A3: Stay true to yourself, be your wonderful self, believe in yourself and let no one change who you are in any way. I think that’s why I work with kids, so I can help them find that courage to be themselves in this world. 

Q4. What do you want people to know about autism? 

A4: That it doesn’t exist! That only autistic people exist. That we are a minority people struggling to have our voices heard above the noise of professionals and the horrible historic ideas which are still perpetuated today. That we have feelings, we are hugely emotional and that we are not things to be researched or studied. We are not a mystery, we are whole and human and if you need to know about the autistic experience you can just ask! 

  

Guest Blog Post by Rosemarie Maughan Mouzali

Hi Everyone, 

I am honored to be asked to write a piece as a Traveller mum to an Autistic child. 

Firstly let me introduce myself, I am Rose Marie an Irish Traveller. For those who may not be aware Travellers are an Irish ethnic minority group native to Ireland. We have a shared culture, language,history ,traditions,customs and a nomadic way of life. Due to this difference from the wider Irish population we have suffered generations of oppression and social exclusion all our lives. We face high levels of discrimination in all aspects of our lives. For example whilst trying to access accommodation, education,health services, recreational services etc.. even in death with Irish towns closing down during our funerals.

Life expectancy at birth for male Travellers has remained at the 1987 level of 61.7 years, which is 15.1 years less than men in the general population, representing a widening of the gap by 5.2 years. Life expectancy for females is now 70.1 which is 11.5 years less than women in the general Population with suicide rates six times higher than the wider population.(results of the all Traveller health study 2010).
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For generations we have survived a state policy of assimilation, hoping we would turn into non Travellers. Many Traveller Activists including myself took up the position of human rights activists within the Irish Traveller Movement in solidarity with non Travellers to fight against this forced assimilation and denial of our basic human rights. We have achieved amazing results such as developing culturally appropriate legalisation/policies with meaningful Traveller participation and the recognition of our Traveller Ethnicity on the 1st of March 2017.

Unfortunately we still are one of the most oppressed/hated minority groups in Ireland simply because we are different and protrayed in a negative light by the majority of Irish society. We are misunderstood,feared and hated by individuals who have never met  a Traveller. Don’t get me wrong there is good and bad in my community just like all communities yet we are held accountable for the actions of the minority within our community often individuals we have never met or know.
Due to this oppression all my life I understand and can relate to your struggle, our stuggles are based on our identity,they are both fuelled with ignorance and hatred.I feel the pain and internal oppression it can bring.

Traveller children are growing up in a country where they hide their identity to avoid bullying and secure places in schools, Traveller adults hide their identity to gain employment,we want to be equal in society just like you but not at the cost of who we are. Travellers are still denied our right to be nomadic and still live in third world conditions due to the lack of implementation of national policy and the underlying discrimination behind this. So we continue to fight on.

Secondly, I want to take this opportunity to apologise to each and every one of you for as a human rights activist not being aware enough of your struggle nor supporting your struggle enough. Before my son was diagnosed 18mths ago as an autistic child I thought I was aware of what Autism was,I thought I knew about your struggle. I am deeply ashamed to say I actually knew very little.

Since my son’s diagnosis my eyes have been truly opened to your struggle,I have been doing my best to educate myself on Autism and the Autistic struggle whilst sharing my learning with anyone who will listen. In particular among the Traveller Community, of course there are many Autistic adults and children within our community just like all communities. Unfortunately as a community we do not talk about it openly which I have been trying to change through creating awareness and promoting Autism Acceptance and solidarity with the wider Autistic community,you.

I have been trying to build links, bridges with Autistic adults so we can work together in solidarity to create positive change ,build a better world for everyone. I finally made the right links and those bridges of solidarity and love are growing between us. 

Please view this piece as me a Traveller mother of an Autistic child reaching out to you in love, acceptance and solidarity. It’s important the diversity within the Autistic community is recognized, accepted,embraced and loved building on our solidarity together.

I am looking forward to working with you all not just in April Autism Acceptance month but every day. 

💛One Love💛

Rose Marie
Proud Mother