In his latest update for our Better Lives blog, Cllr Adam Ogilvie helps to raise awareness of Autism.
I thought I’d do something a little different for my blog piece this time. Instead of writing about a particular issue, I have done an interview with Christine about her daughter Amber who has autism. I know Christine as she lives in my ward and we regularly interact as she is heavily involved in the residents association for the estate she lives on in South Leeds. You may have seen the campaign Christine established – Amber’s Autism Awareness – particularly over the last week of activities around World Autism Awareness Month in Leeds.
Q. Christine can you tell us a little bit about your daughter, Amber?
Amber is a happy little girl; she loves music and is very picky about what she listens to. She likes bouncing on her trampoline, ice creams and going to the seaside. She attends a mainstream school and is doing extremely well. She has a gift for making people smile.
Q. What made you set up the Amber’s Autism Awareness campaign?
Amber was diagnosed at 2 years old. Telling family and friends caused a mixed reaction. Some were sorry for us, my sister cried; it caused a general worry for her future. None of us had experienced anyone close with autism so I set up a Facebook page to document day-to-day things so they could get a better understanding. It’s an uneasy feeling when those close don’t really know how to deal with your child. We’ve all learnt together that things are not as bad as the diagnosis made us think and she surprises us every day. Through the page other families would relate to what I was saying so it’s now become awareness for everyone and a place to comment that “phew that’s not just us”.
Q. How is the campaign progressing?
Our campaign then moved on to fundraising which we have been doing for the past 3 years. I maybe naively didn’t realise that SEN funding didn’t cover those extra things that would make life easier for Amber and her teachers. We bought emotion cards and sensory toys, equipment for the playground and this year we want to provide iPads. All the children that need them can use these things. People are very supportive of our cause and I’m grateful for that.
Q. What is it like being a carer/family member of someone with autism?
Having an autistic child is a whole lot of different experiences. You don’t know what you’re going to get when you wake up. She could surprise you with a new phrase or song she’s learnt, she might be on edge all day and lash out. You are constantly on high alert for any meltdown triggers; there are times when I just can’t explain them. Her brothers are very caring towards Amber but, her brother Halen is having a hard time right now as she lashes out at him. I think guilt would be the most used feeling for me right now. I question myself a lot if what I’m doing is right by all my children. Juggling my “mainstream” kids and my disability and Amber can be tiring, but those days where they sit and play or Halen brings her some crackers and puts her favourite programme on I feel proud.
Q. What support is currently available for Amber and you as a family?
We’ve just had to get Amber in at Camhs for her violent behaviour. We had no specialists for home and the wait felt like forever, because we’ve coped for so long when the under 5’s support stopped we were left on our own. You have to start all over again and get a whole new referral. It’s frustrating as she’s never stopped being autistic and it’s not unusual for behaviours to present themselves without warning. I can accept though that waiting times for all services are long.
Q. In your view, what needs to change to make life easier for people with autism and their families?
Talking to many different families, the one thing they wish is that people understood it better. The true version of autism not the textbook version. You find that medical notes cover many of the basics but you can’t learn based on the jist of something. You need to find real stories, real experiences, don’t feel like you can’t ask things if you already know someone on the spectrum. Many of us struggle to explain it ourselves as there is no definitive cause. We have to figure it out too from experience. Awareness costs nothing and can make a whole lot of difference. This is a lifelong disorder, everyone wants someone to get them and understand what they’re going through…autism is no different.
Q. What’s next for the Amber’s Autism Awareness campaign?
Amber’s Autism Awareness is going to continue telling Amber’s story, good and not so good. We will keep talking to people about their experiences and help as much as we can. If I think something needs changing I will ask for it to happen. In the future I want to expand on what we do so we can help more both financially and the awareness side too.
Q If you had one key message you would like people to take around the campaign?
I guess our message for Autism Awareness month would simply be, educate yourselves, be kind to everyone and speak up if you think you need to change something!
If I can thank Christine for taking the time to tell us more about Amber and the campaign. To follow the progress of Amber, Christine and family and to find out more about the Amber’s Autism Awareness campaign please take a look at https://www.facebook.com/AmbersAutismAwareness