In January, Rosalind Hardy spoke to us about living and growing up with Apsergers syndrome and how she can't be defined by the diagnosis.
Here is an auto-generated transcript of Rosalind's words:
Hello – my name is Rosalind Hardy and I’m a young adult with Asperger syndrome.
Some things I like are animals, helping at my local stables, Facebook, my cat Merlin, playing the piano, reading, also my two-year-old nephew Dylan and my new baby neice little Astrid.
Some things I don't like are rude people, wasps, cruelty to animals, spicy foods, people making assumptions.
We are all unique. People have made and still make assumptions about me when they find out I have Asperger syndrome. They assume I can't make eye contact (I can) I don't like to be touched or hugged and I'm not sociable (I think I am).
When I was very young from a very young age I had fine motor skills. I could tie my own shoes and do up buckles plus hold a pencil well.
I used to pretend to be a cat as I found this easier than being a human child.
I could read out loud but couldn't use speech to communicate so I could read from a book, like a child's book I could read the words on it and but I couldn't lookup and speak to everyone, like speak out loud.
I used to escape from buildings. So when I was three my mom hid the key. She
used to hide it really up high out of reach and I obviously saw this and I climbed up to get the get the key because the next thing my parents and my sister knew was the door was wide open there was a big draught coming from the door and they could see see me running down the road with a sewing basket in my hand and a huge grin on my face.
Luckily my sister managed to grab me before I got to the road.
Before school I attended a kindergarten part-time then a nursery.
They tried very hard with me but I was very difficult to manage.
When I started school I attended a behavior unit in a mainstream primary.
They tried to integrate me in the mainstream school but this didn't work out as I was too disruptive. I couldn't speak properly until I was seven years old. I used to lash out at other children at school because I was really frustrated.
I fell in love with animals and found them much easier to get on with than humans so I ran away from schools. The little story I wanted to share is I ran away from school when I was six to see a cat. It was a ginger cat I remember very well and we ran away from school.
We had to go over the A3 - yes on the bridge not on the road luckily - and then we got to the house, my friend's house and the cat was in the distance in the garden and hopped away and then the mum came out and only then I realized oh I might have some consequences for this
behaviour and the consequence was that I lost my only friend because the parents didn’t still want me seeing their child and the school thought it was inappropriate to see the child so it's a shame the way things worked out.
Getting my diagnosis.
My mother thought I might have some additional needs when I was 18 months old - actually she said it's probably from when I was 14 months old and partly because of my behaviour. I was diagnosed with Asperger syndrome when I was seven years old. Having a diagnosis at an early age really helped me.
I don't remember getting my diagnosis or when exactly my parents first talked to me about it.
My mum and dads were veryhonest with me and I knew from an early age. They were always very positive and like when they first heard they talked to their friends about it and they were like ‘aren’t you devastated to learn that?’ And my mom's like ‘no this is brilliant now we can get her the support she really needs and the help she really needs to get.
I know my mum sometimes felt negative about what would my life turn out to be like, she was very worried for my future but she never passed that on to me so I always felt they were really positive with me.
I started a new school which was a specialist school for speech and language. This school particularly helped me with understanding language, not taking things literally and improving my behaviour
It helped me learn new language and communication skills and I made a good friend which I still have this friend now – Jocelyn. I still have now is a really fantastic best friend.
I moved on to a specialist MLD which is moderate learning difficulties secondary school.
This school helped me academically and helped me be more independent. I really enjoyed my secondary school because everyone else, who they were and I felt a part of the school and also I made more friends.
I was ready at sixteen years old to move to a mainstream college. I studied equine studies for a year then four years of animal care. College taught me more independence and there are a few ups and downs but generally it worked well.
Things that were tough growing up.
Communicating was hard at first so I was really frustrated which affected my behavior and I had real difficulty in making friends this is partly because of my behavior and also because I didn't really know how to make friends I haven't learned that yet and it took time for me to understand unfair consequences for my behavior like the timewith the cat when I lost my only friend.
Getting the blames for things that weren't my fault so I specifically remember and a story about a broken ruler and I specifically remember it wasn't me it definitely wasn't me but the children seemed to blame me and the teachers who were questioning me so much and so hard that I felt like I had to say yes it was me because it was too much pressure, it's far too much pressure to not say no and I couldn't handle the pressure anymore.
People not taking my phobias seriously like there's at school one time we had some Christmas crackers and I absolutely hate Christmas crackers. I'm really scared of them that's one of my phobias.
And so their solution to this was to put me in a classroom completely on my own with the teacher popping her head around the door well just checking I was okay and actually maybe another way would be to put all the crackers at first and get rid of all the debris and then I go in.
Or after Christmas dinner with my friends I go out while they pull all the Christmas crackers so maybe there could have been another way around that
Things that went well.
Some things really well when I was growing up including getting support at school with my communication. Taking apart in a person-centered planning project - so this was a project where I got a full circle of support from friends family and professionals and they helped me do things like traveling to Battersea Dogs Home for work experience and so traveling to Battersea dogs home meant changing at Clapham Junction. I was about 15 at the
time and hadn’t really travelled independently at all. I had a travel buddy with me the first couple of days and then I managed to do it on my own which was a huge achievement for me.
Being supported by people who took the time to get to know and understand me, attending
participation team and given my views – so as a young person (I know I've got a slightly different role being an older person – I’ll talk about that a bit later) but being a young person I was involved a lot in the recruitment for the participation team in in the Kingston Borough.
And we were going to recruit people that are going to work with SEND people. I even gave a couple of people the job at one point so it had to be really professional and so we've discussed everything with managers : ‘we would now like to offer you the job’ which is a fantastic opportunity to have and yeah and I also did presentations. I've done a lot of presentations everywhere which has been fantastic and really helps with my confidence.
Some of the things that I find challenging now are my phobias – so I've got a lot of phobias around Crackers, Christmas crackers, thunder, Fireworks, party poppers any sort of loud sudden noises that I'm really sensitive to and it does make it difficult to go out into town sometimes.
If there's lots of balloons I find that really tricky so it is really difficult.
Also stressful situations, new environments, judging if and when to tell people about my Apergers because I don't really want to be judged or treated any differently. At the stables I go to I haven't really told them that I've got Asperger syndrome because I don't want them to treat me any differently.
I don't want them to say ‘oh we better not tell you off and you're wrong because I don't…’ I want people to say if I have done something wrong and say to me ‘oh you didn't do it right, you've got to do it that way next time’ and so treat me like a normal human being. So yeah that can be tricky.
Also rules, Not safety rules. Like I'll stick religiously to the driving rules, driving the speed limit, I will do that I will not go over even by one. I won't go 31 I'll go 30 miles per hour if it's 30 miles per hour zone.
But I find rules like what I call silly rules more tricky. Like one time I went into a museum at one point with my parents and they and then one of the managers said ‘Oh could you take your backpack off and have it by your side?’
And I was like yeah why? Because I'm not gonna knock into anything. I know I'm not going to knock into anything so why do I have to do it? But actually the participation officer said it in a completely different way that I now think of and I now completely accept.
She said they couldn't discriminate against people. So they couldn’t say to this
person ‘you’re wobbly, you have to not have your backpack oh but you’re fine your
not wobbly’. They couldn't do that and that’s absolutely awful. Of course they couldn't do that, so to make sure they're not doing anything discriminating they have to do it one for all. so everyone has to take their backpack off and no one's being discriminated against. Now I just think of that and it's all good.
And also this is real challenge is that Asperger's syndrome no longer exists as a diagnosis.
That's a big challenge because I've got Asperger's syndrome. I don't have autism or ADHD . I have Asperger's syndrome and I think it’s more about identity and where you fit in and is it's so difficult that they've taken away that identity and ‘Oh everyone's autistic now’ so yeah that is tricky.
Things that help.
Some of the things that I found helpful are people understanding my phobias and making allowances for them so like checking for balloons before I go into a room. Being with people who understand me and my diagnosis and how it affects me.
People explaining why rules are in place in a way that I can relate to.
Having familiar people with me in new places and people not treating me differently because of assumptions they have made about Asperger syndrome.
Strengths and achievements.
Some things I’m good at are driving, leading horses, interacting with animals and playing the piano.
Some things that I have achieved are: I passed my driving test - luckily first time (I was very lucky that day) and also having a variety of jobs.
So I do some dog walking in the week, I do my stables at the weekends leading the ponies for children when teaching children how to ride or taking them to the park for a little ride.
Also I have got a new role as sessional worker as part of the participation team with Grace Oakville who I’ve done a lot of work with, so now I get to help on the recruit crew and any presentations that people are doing I get to help out more work with them and the admin that they needed me to do which is fantastic I love it.
And also their training and so I've been doing lots of training around England. So the first lot of training was about engaging and involving young people with special needs and so lots of professionals came who run services or work for services and they were learning from us how to engage with young people. So that was fantastic.
We went to York - York was fantastic - and lots of places: Nottingham fantastic, Manchester and this time I'm doing some more training with a parent this time - Isabel - and a young person - Joe Fautley I’m doing it with – and we're going around the country talking about autism and post-16.
Again a fantastic opportunity, really the best work opportunity I've ever had. And I’m also overcoming nerves and increasing confidence.
So I was really nervous when it came to presentations.
There's this one presentation I've got to do that was in front of 350 people. It was absolutely terrifying. I was so ridiculously nervous but I managed to do it and now I'm like ‘50 people? Easy’ or you know it's only 200 people so ‘yeah I've done 350 people’. So now I'm like ‘yeah I feel good’.
Hopes and dreams for the future.
One of my dreams I've actually done and that was to travel to Australia. I got to my 30th birthday year in 2018 and I go to go to Australia and travel around which was absolutely fantastic. I got to cuddle a koala feed a kangaroo. Go to the Neighbours set. Absolutely amazing. Oh it's just fantastic.
I’d also love to go to Africa.
On safari and just see the big cats and big animals and also west coast of America. I’d love to go to Canada. Lots of places I'd love to go.
I would love to meet, always I hope and dream is to meet my favorite celebrities - I do love my celebrities!
And also a future dream is to live more independently so that is more for the future
We're all different. Don't make assumptions about us.
Even if children and young people can't speak they can communicate and give their views and feelings.
Phobias and sensory needs are serious please don't underestimate them and always try to understand.
Treat us as equals but also as individuals.
We are not defined by our diagnosis.
Thank you for listening.