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Jun. 17, 2018

The stigma around it isn’t true. Yes, it can be hard, and it will test you sometimes but at the same time, it’ll teach you so much. You will create this bond that cannot be broken. – Adam 

 

They are not stupid or dump or slow. Most people with autism are highly intelligent, caring and kind. Just because they have a disability, it doesn’t define who they are. – Rebecca 

 

It has many ups and downs. The ups include moments of laughter and joy that a sibling brings to another. The downs include shouting, crying and even scraping. It’s a tough experience over all but it has many rewards that no other sibling can bring. Their intelligence can surpass many people and it’s amazing to see how smart they are considering all the stuff that goes on inside their own little worlds. – Jake 

 

We aren’t at a disadvantage as commonly thought. I think having a brother with autism has given me an advantage in life. Yes, I have missed a few events because of his appointments or had to wait to buy new shoes because mum had to pay for therapy, but he has given me so much more than money can ever buy. He has taught me patience and to enjoy the little things. I’ve learnt to accept everyone for who they are, something that is hard for young people to understand. Kian has even given me an interest which I can receive a further career in. He has genuinely thought me kindness and that’s the only word I can use to describe it. – Kim 

 

I’d like people to know that even though my brother flaps and doesn’t look at you, runs around and repeats sounds over and over, I think he’s funny. And I think he’s kind. And I know he loves me. I do wish he would interact with me more and I wish he didn’t scream when he’s mad. But I love to help him learn and I love helping him with his therapy. – Evelyn 

 

You get used to it, people staring, kids pointing at the empty space where my sister's legs should be, kids hiding behind their parents, actually afraid of her. Katie-Tara is as equally beautiful as anyone else in this world, sometimes I look at her and actually really look at her bright smiling face and I think to myself, she is so breath taking! Katie-Tara is a little social butterfly who is always out and about, chatting away to people. When she wheels into a room, it lights up and it's virtually impossible to have a conversion with her and not burst out laughing because she's so funny and comes out with the most hilarious things. The uncomfortable looks and people elbowing their friends to look at her doesn't faze her in the slightest. If someone is in her way, she's not afraid to politely ask them to move, and if she spots someone looking at her she'll say 'are you looking at how beautiful I am?' Her confidence is unbelievable, she knows she is a queen ! What I would like people to do is take a minute, think to yourselves "if I was her, would I like to be stared at" because although it doesn't bother her, she is perfectly imperfect and rather than staring at anyone who is maybe less fortunate than you, maybe you should try smiling at them and hey, you never know, they might just smile back. - Kori

 

Thanks for reading. 

Freya xx

Mar. 4, 2018

For the last 3 years I've been spreading awareness on what autism is for me and my family. Dian has been nothing but a gift to us and I will forever be grateful to him for encouraging me to be a better and bigger person in life situations. When I look at people my own age and some even younger, I realise how much maturing they have to do, compared to me. We all grow up at different ages, that doesn't mean there's anything wrong with us.

For me, I started growing up instantly after Dian's diagnosis. I wanted to be a protective, loving and trusting sister to Dian, I wanted him to know I'll always be on his side and there for him in times of need. While you may think I missed out on the growing up teenage phase of my life, I didn't I simply experienced it sooner.

I hear and see young people use the words "retard", "autistic" and "handicapped" as if it’s something humorous to call a friend when they make a mistake. But what if someone started using your family’s names to do the exact same thing? "Are you stupid like Michael?" "You're as bad as Sarah" "You're such an idiot like David". If anyone overheard a family member being treated like that, you'd be angry and heartbroken.

When I hear young people abusing the word "autism" to make a joke, it makes me angry. They don’t see the struggles Dian has every day. How helpless I feel when he's having a meltdown. The joy of seeing him finally hit milestones we were told would never happen. But how do I make them see what I experience every day?

You come to a point in your life where you realise you can't change people's perspectives if they don't listen. I can scream and shout at them all day everyday but if they don't listen, they won't change. It's a battle I can't win. But a battle I won't give up on. I will continue to talk about autism. I will continue to share experiences and give people a platform to share theirs. And maybe, just maybe, something I say might change the way they view the word "autism". But until then I won't shut up no matter how many people tell me to.

 

Thanks for reading.

 

Freya xx

Feb. 4, 2018

Amy Tracey is a young woman who is on the Autism Spectrum and is currently attending college in Dublin. Here, she shares her story and experiences she's faced along the way.

 

1). Tell us about where you go to college and what you do in college?

I am a second-year student in the National College of Ireland and I am in my fourth semester studying Business. The topics in the course range from Law, Maths, Accounting, Marketing, Economics and many other modules.

2). How have other students interacted with you? Has it been positive or negative?

People are usually open to conversation if I start talking to them which is good and positive. Students tend to be with their friends from secondary school but they do have conversations with me and make an effort. There are times when I’m not talking to anyone but I never feel lonely. I like my space and I have a lot of studying to do. There are also people in the class I still have not gotten the chance to talk to yet at all. But everyone has been positive and people are friendly.

3). What has been the hardest part of attending college?

Sometimes getting into groups for assignments can be difficult. Some people have priorities and other things to do which is understandable. However, that can make it hard to set up times to meet to complete assignments and I can get uncomfortable with schedules. I always assume that that people in my new group will meet up at the same time and same place as the people I have worked with on previous assignments but that’s not what happens which is often hard for people on the spectrum, especially for me. I’m also in four or five different group assignments this semester which is very hard to manage.

New subjects I am learning such as IT and organisational behaviour are hard for me to as it’s another change. Change and adapting to new things can be overwhelming for someone on the spectrum such as myself.

4). What has been the best part of attending college?

Being independent, working really hard and getting good grades in assignments. As I’ve always struggled to pass school before I started attending college and was diagnosed with autism, it’s good now that I am passing everything and doing well in certain areas. I think gaining more qualifications is great and it is something that is needed in life as it adds to me getting an actual career in Business.

 

A big thank you to Amy for sharing with us and if you'd like to follow her adventures on the Autism Spectrum, you can find them here www.twitter.com/amytracey94 

Nov. 30, 2017

I decided to do a blog post based on other people’s thoughts on what autism means to them and what word they would use to describe autism. These people consisted of mothers, fathers, brothers, sisters, aunts, uncles, cousins, specialists, friends and community members. I got a total of 35 responses including Autism Advocate Anna Kennedy OBE and Actress Kacey Ainsworth (Little Mo from EastEnders).

Rollercoaster

Uniqueness

Understanding

What autism means to me is that it's made me become my children's advocate. It’s given me the courage to speak up about things that I wouldn't have before their diagnosis and fighting for them to get the best support. I will always do it in a heartbeat.

Autism means seeing the world in a different way to others.

Spectrum

Understanding 

Complex

Autism is part of my family. It’s always been there it always will be there and its with me every minute of the day. I don’t view it as a burden I simply view it as part of my everyday life I never ignore it I simply advocate for it - Anna Kennedy OBE

Worry

Sensitive

Autism to me means people communicate differently.

Unique

To me autism is seeing and understanding the world in a heightened sense of being.

To me, having Autism is an important and integral part of who I am as an individual. It is who I am, and I always like to see and make the most of the positive qualities that having it can have on others as well as myself. I feel that it brings out the best in me and I would not change a thing.

Hard but unique.

What does autism mean to me? Being able to know why I have had random struggles socially growing up and being able to fix certain things by working on them.

Complicated

Autism means lifelong advocacy, patience, education.

Complex

a journey to become more informed.

Unique

Autism to me means someone who thinks in a different way but should be treated the same as everyone else.

Understanding

Autism means viewing the world same through a different lens. We learn that it’s important to understand that people with Autism may be different, but they do see the same world we see, just in a different perspective.

Different

Unique

Gifted person that sometimes finds it difficult to communicate their needs or struggles.

Life  

I've come to see each of the people who have autism in my life as a blessing, yes it's been hard at times but then whose life isn't hard? We all have ups and downs in our lives every day. But, I for one would never change any of the experiences I've had with my family. I love the wisdom, kindness and laughter I have shared and received over the years from each and every one of these wonderful children and now brilliantly inciteful adults that they have become.

Unique 

As a mom, autism means to me vulnerability, challenges, and a lot of worrying.

Autism impacts each individual differently through various challenges. With more acceptance (not just awareness), individuals with autism can prosper in life via relationships, jobs and education.  Autism is a disability but so many strategies exist to help those diagnosed find their own way and express their own views in life.

Autism means compassion, understanding and acceptance.

Special

A different way of seeing and being in the world. Autism makes us seek to understand each other better. I'd prefer to visit shops when they put on quiet shopping evenings for people with autism. Maybe it's a clue as to how we can evolve as humans.

Amazing

Those who have autism are actually far more advanced than those of us who are not. They use a larger part of their brain function, and generally have greater recall abilities.

Unique

Challenging

It’s a part of my everyday life. Autism has taught me many important things about life such as perspective on what truly matters & looking at everything from a different view.

Different

Autism means to me: thinking outside of the box – Actress Kacey Ainsworth

Understanding

Uniqueness

Autism is a condition that is often misunderstood by society and to me, it is something that can be learned about, that young people can be allowed to express themselves and be themselves in a safe space.

Autism to me is a constant reminder that there is no normal in this world, which is such a great thing...and I take pride reminding others of that when one is judgmental and asks "what's wrong with him/her?" It's being a voice for the voiceless.  

Autism has shown me how incredible the brain can work and we need to all sit back in awe at the wonders of the obstacles people with Autism overcome each day and can grow and flourish with the proper love and support.

Honest

It means seeing the world in a different way.

Autism means that every day is unpredictable. My sons progress has been slow and sometimes I have to remind myself that it’s not a race. And when my son does achieve a milestone or makes a new gain, it is beyond rewarding. He makes me proud every single day.

Unique

Challenging

Autism means that my everyday life is a bit different and harder than your average neurotypical person. I find socialising and sensory input very overwhelming and I spent a long time feeling like an outsider. But there's always hope and a positive side. From my autism I am a hard-working, caring and unique person and I would never want to take my autism away from me, it's part of who I am.

Fantastic

Delightfully different

Hard

Autism is learning about people who have a unique way of living and viewing the world. Living with Autism means we must be ready to adapt, improvise because at any moment our daughter may be overwhelmed by something in our environment and needs some reassurance. Autism has taught me how to let my guard down and enjoy the power of spending quality time with another person. Understanding the components, one has with Autism means you developed special patience, love, dedication and cannot picture life without them. Our daughter needs support, it means the world to her when people accept her for who she is.

Complex

Relentless

Having a 23-year-old son with autism has had a huge impact on our life. Sleepless nights and struggling to relax. Our son constantly “moving the goal posts “. Strain on our marriage and huge difficulties for our younger son. Never being able to holiday as a family and the future is a huge worry. Beyond all that, I have a love for my son so strong. My love for my family and my faith in god gives me my strength.

Unique

Different

 

Thank you to everyone who took part. 

Freya xx

Oct. 8, 2017
1). Tell us a little bit about yourself and your connection to autism.
 
My connection to autism is my brother, Dominic. He is about two and a half years younger than me. My brother was diagnosed early, maybe around the age of 3 or 4, so he was lucky. As a result of this, I don't remember there ever being a time that I was unaware of autism. So, although I'm well aware autism isn't "ordinary", to me, it is very much normal in every day life. If someone asked me for a definition of what autism is I wouldn't know what to say. With Dominic, it's definition can change on a daily if not hourly basis. However, I can spend two to three minutes with someone and immediately tell whether they have autism, Aspergers or ADHD (or all three). I think everyone with autism has their own super power but this is definitely mine. 
 
2). How would you describe your relationship with your brother?
 
The relationship between my brother and I is really special, if a little turbulent at times. But I think that's normal. Dominic has known me from day one so he is very attached to me. In my opinion, I think I am Dominic's favourite human, although my mum may have something to say about that. He finds it difficult me being away. Aged 17, I moved to Cornwall and have never been home for long periods of time ever since. Despite this being such a long time ago, he still finds it hard me being away and on the rare occasions we speak on the phone he's always asking when I'm coming home. When deciding on family days out, it is a lot easier to negotiate with Dominic when he learns that I am also coming. Suddenly, the day trip he was moaning about going on doesn't seem so bad anymore as Amy's going to go too.
 
Dominic and I share a little sister, Katie. Katie is just under 8 years younger than me and 6 years younger than Dominic. They have a very different relationship to Dominic and I. I have been with Dom since the day he was born. Whereas, Katie turned up a lot later. Whilst I am ingrained into Dominic's routine, after nearly 14 years, I think Katie is still a bit new and alien to him. Of course, he still loves her but he will never connect with Katie like he does to me. 
 
For the most part, Dominic is a really lovely boy. He is funny, inquisitive and pretty charming. He tells me on a regular basis how "beautiful" I am. If I had a "normal" brother, I would probably be lucky to get this on my wedding. Not everyday is easy, but these little compliments are a reminder of what a great brother he is.
 
3). Have you found the services to be helpful for your brother?
 
 Talking about the services that Dominic receives is difficult for me. Being an autism sibling, I always had a lot more responsibility than most other children my age. But dealing with his services was never my job. But I've watched my Mum sort it all out, for a long time now, so I can give you my memories of that. 
 
To be honest, I think we have had a bad experiences with the services and education system that Dominic has been put through. I'm not sure what it's called but my parents receive money that allows them to pay for Dominic to have an enabler. With an enabler, Dominic is able to go out with a young adult to do activities he enjoys, hopefully giving him a little more independence. Dominic going out with his enablers means that my Mum and Dad get some respite too. 
 
I remember a time a woman came over to assess Dominic's situation. She told my Mum after "assessing" that she was going to cut most of Dominic's funds. Of course, my mum fought it and when my Mum puts her mind to something it happens, regardless of who she annoys on the way. She got what she wanted. This would be fine if it were a one off thing... but it's not. Every year, she faces battles when it comes to getting the services he needs.
 
At Exeter College, where Dominic attended, all students are entitled to three years of free education. However, my Mum was told last year that they weren't able to offer Dominic a third year. This is discrimination. Of course, Mum fought it and won.
 
Dominic went to a mainstream primary school, then, he transitioned into a specialist school for secondary education. Because the specialist school was a fair distance from us he got picked up by a school bus. When he went to college, he was told because he has two working legs and is physically able to step onto a bus he was able to travel independently. He was told his bus services were cut due to lack of funds. 
 
If I'm honest, I think Dominic has been really let down by most of the services. One day, I know this will be my responsibility, which makes me nervous. She has a bucket load of determination that I'm going to need to in order to get the support Dominic needs.
 
 4). What has been the most important thing you've learnt as an autism sibling?
 
I think autism has taught me perspective. Being a sibling of a child with special needs, I have watched my brother grow up in a world that isn't designed or accommodated for him. As a result, he faces challenges everyday that often result in meltdowns and screaming matches. Watching this everyday of my life has been tiring and continues to be so. However, I feel like I have a better understanding of what constitutes a problem. In recent years, I have really come to notice how sometimes other people enjoy having problems. For me, this is something I cannot understand. I find it easy to separate myself from trivial matters that others may get wrapped up in. Don't get me wrong, sometimes (actually, all the time), I can be a drama queen if I fall out of a triple pirouette in ballet or a class doesn't go the way I would have liked. I am a perfectionist. But I can move on quickly. It's what I am used to. 
 
5). Any advice you'd give to another sibling who's brother or sister has just been diagnosed? 
 
If your sibling has just been diagnosed with autism, most likely, the books and leaflets you read will tell you quite generic things. For example, your sibling won't understand metaphors, your sibling needs a routine, your sibling will need to be given several warnings before it's time to head out for the day or when they need to turn the computer off. Here are two things the books won't tell you. 
 
My advice would be that sometimes, life is unfair. Very unfair! Here's an example. So, if your parents catch you and your sibling fighting, please know that it is always going to be your fault. If during this argument, it is you making all the noise and doing all the shouting, then it is your fault. Even if they're winding you up, despite what's going on, it's your fault because you're making the noise. You're not autistic so it's you who should be setting the example. However, if you're sibling is making the noise, then it's your fault as well because you caused them to make this noise. Don't worry, it blows over very quickly and it's all fine. But it's just something you have to come to accept. The quicker you do, the better. 
 
Also, another piece of advice I would give is about being in public with your sibling, and how to deal with other people's reactions. Not anymore, but when I was younger, I was very conscious about the way Dominic behaved and felt embarrassed when he did something odd in public (in reflection, this was every time we went out). I used to worry about the way others would react to him and think they were judging me or him.
 
I've read a lot of articles from parents of autism who write about how to deal with strangers who react badly to your child. From these articles, I think it's easy to get in the mindset that everyone is out to get your sibling or wanting to laugh at them, especially when you're already feeling vulnerable. 
 
However, in my brother's 19 year life span, my Mum has only ever had one person approach her and tell her she needs to control her child. Not because Dominic is immaculately behaved (I can assure you - he's not) but because people don't really care. To be honest, this has probably happened to most parents, whether their child is autistic or not. So it is a waste of energy worrying about it! People are so busy and wrapped up worrying about their own lives that they're not going to notice what's going on in yours. I honestly believe that. It's the same about lots of things in life. People get so worried about how they look in their bikini on the beach and how others are judging them. In reality, everyone else is worrying too much about what they look like in their bikini to notice what anyone else looks like! If anyone does care about your siblings behaviour, they're not even worth your energy.
 
Whenever my brother does anything strange, in restaurants mostly, my mum will just turn to me and say "he's just doing his bit for autism awareness". I think this is a really positive if somewhat amusing way of looking at it. If people never have to deal with autism then how are they going to learn about it? In addition, if the worst thing about someone's day is that they had to deal with a funny little chap with autism, it will be quite a good day. 
 
A big thank you to Amy for sharing her story with us, you can contact her on twitter @amymulesx 
 
Freya xx