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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
Sep. 24, 2017

1). Tell us a little about yourself and your connection to autism.

My name is Amy, I’m 23 and I’m from Dublin. I’m studying my last year in a level 7 in Business at the National College of Ireland and I’m going to apply for a degree in Social Science this year. I do voluntary work for an Organisation called Let’s Get Talking and I set up the company’s social media platforms and work in the reception. I have volunteered for Cystic Fibrosis in Rathmines. I am interested in Job Specialisation for people who are struggling finding and keeping a job. My special interests vary and at times but this is something I have been interested in doing for a while. 

I am connected to autism because I have a diagnosis of Autism Spectrum Disorder, Asperger’s Syndrome and Attention Deficit Hyper Disorder (ADHD) and Dyslexia. I have a family member also on the Autism Spectrum.

 

2). How did you feel when you were diagnosed with autism at the age of 20? 

I felt as if I should have been diagnosed earlier on in life. I was diagnosed as Dyslexic in school at the age of 7 and I was taken out of mainstream school. I was put into a special needs school for children with dyslexia and my reading and writing wasn’t the worse. When I completed this school, I went back to mainstream school and I couldn’t integrate due to the stress, not being able to socialise, being left out and the heavy work load; I had to do second class maths in fifth class and I would be up all night doing homework only to go into school the next day and have it dismissed as not good enough. I had the school refer me to social classes to try and understand why I wasn’t socialising properly and I had two clinical child psychologists to help with the transition into this new school and they didn’t seem to pick up the obvious answer that they had assumed once back then; I had autism so yes it’s frustrating being assessed that late. One of the main reasons I wasn’t assessed was because of the huge difference in autism features in males and females so I have heard.

 

3). What have you found most challenging about your autism?

People telling me I don't have autism - Many people who have had a late diagnosis; it answers many questions about yourself that growing up I would have struggled to figure out and really understand. Most of all it was confusing, upsetting and a relief all at the same time. The confusing part of getting diagnosed with autism was not knowing what autism even was, I had never heard of it, so when I went and did my research on the meaning I came across the lower end of the spectrum and I did not see myself in that and I even found Asperger’s syndrome very hard to understand. It was something that overtime I understood and once I understood it then it started to make sense why I was the way I was. At the time, I was struggling to make friends and back then, three years ago, my colleagues had a problem with the way I communicated with them. Customers would say I lacked in communication which I didn’t understand why. I then had my assessment at that time and that was one of the reasons why I had it so that was in a way a relief as I was getting answers. Now I have to learn new skills that I should have been given years ago and those skills would have changed my life right now and made a huge difference.

 

4). What is the best thing that's happened because of your diagnosis?

 Once I had my assessment, I had a more better understanding of why I did things differently, I always knew that I saw things a bit differently to everyone around me so it definitely explains a lot. For example, I was always very sensitive and fussy with sound more than anything else and I still am. It used to be hard not knowing why and it used to be hard trying to explain to people on a night out that I have to suddenly leave at 12 am on the spot because it’s too loud but having Asperger’s explained this. It explained why I chose to not go out a lot and why I had a hard time integrating into new places so just been able to work on that as much as I can has really helped. Academically I was going backwards and nowhere for years and it was only when I got assessed with autism could I avail of the right supports and see where I went wrong in order for me to get to college today, that was definitely one of the best things along with helping other people in my situation.

 

5). Is there anything you'd like to say to someone else who could be getting a late diagnosis?

Getting an assesment done can be very scary and life changing but it will help you out in the long run and explain certain things about yourself that you struggled to understand for years. You can try and get help with things you are struggling with such as socialising or needing supports in school or college which you can avail of. 

 

A big thank you to Amy for sharing her story - you can contact Amy on Twitter @amytracey94! x

Freya xx

 

Aug. 27, 2017

Autism is not an alien. It’s not a disease. It’s not life ending. Autism has its ups and downs. Autism affects everyone differently. But it does not wreck families. It does not wreck my family.

Dian was diagnosed at a time when people hadn’t really heard of autism. Well I hadn’t heard of it anyway. 11 year old Freya’s head spun when she was told her little brother had autism. She didn’t know what this word meant for him. What was going to happen. Little did she realise it was a blessing in disguise.

The last 7 years since his diagnosis have been a rollercoaster. We’ve had to fight to get him the services he needs. We’ve protected him from people who’ve put him down because of a label he’s been given. We’ve celebrated milestones that seemed impossible. This hasn’t wrecked us, it’s made us.

I’ve grown up quicker than I thought I would. I’ve matured and stepped up in ways I didn’t think I would for a very long time. Dian’s diagnosis has helped shape me to be a better a person. It’s taught me to not judge, to love and that family comes first. For someone to turn around and tell me autism wrecks families clearly shows me how uneducated they are and how they’ve never had the pleasure to get to know someone with autism and see that they wonderful human beings.

My family is a little army. You put one of us down or treat us negatively, you will have the whole family to answer to. The only family autism wrecks is yours when you’ve disrespected us. If you’re not a part of an autism family then don’t be making statements you know nothing about. I wouldn’t change my family for the world.

To the man who told me autism wrecks family, I hope you realise just how much you’re missing out on.  

Jul. 23, 2017

Have you ever saw someone out and about and think “what is she wearing?” or seen someone eating something and think “you should be eating a salad instead”. I know we’re all guilty of this. It’s in us as humans to judge. I do hate it though. I’ve gotten to the point where I’m fed up with myself judging others even if it is because I don’t like someone’s outfit or I don’t like something someone is eating. It’s mean and rude and not okay to put others down for their life choices. I can preach and preach on why you shouldn’t judge people with autism but if I do judge other people especially when I don’t know what’s going on in their lives how can I expect you to not judge?

I now find I correct myself when I go to judge someone. I’ll tell myself that’s not okay, you don’t know why they’re doing what they’re doing and they deserve respect just like everyone else. I think that if we all did this, people’s automatic response to what someone else is doing with their lives won’t be so negative. I don’t think it’s just big gestures or things that stand out that get judged, small and not so obvious things do too. For example, Dian wears a chewable stick man around his neck that hangs from a string and it’s something for him to bite when he is agitated, excited etc. Every time he wears it in public he will get at least 3 different people either point it out to another one of their family members or just staring at it. It’s just a piece of rubber hanging from his neck but why are people so quick to comment on it when they have no clue why he has it?

Everyone is different. That isn’t hard to understand, right? Yet people are so quick to judge others for being different. It’s really frustrating thing to get your head around because it makes absolutely no sense whatsoever. People need to just accept the fact that everyone is different in their own way. There’s nothing wrong with it. Judging can really affect someone, like when Dian has a meltdown in public and people are standing around and staring it doesn’t help him, it makes it worse and harder for him. While you may look at it as a simple look or comment it can actual have a huge effect on the other person.

I know that this blog post isn’t completely about autism but I feel it’s a really important message that’s worth sharing. I know that if people stopped judging others they wouldn’t be so quick to judge a child because he acts differently from theirs. Maybe next time when you’re out doing the shopping or going for dinner and you see someone that you find yourself judging just stop yourself. Don’t allow yourself to, not only will it stop them feeling uncomfortable and ashamed but it will also make you feel better about yourself.