A message for Mr Cameron

Ok, So I had some problems with my auto publisher yesterday and this is a bit later than planed! However I think you will agree it was worth the wait. Colin explains how life is like for him today and back when he was a child. He tells us about his late diagnosis and the effects its had on his life. He even sends out a message for Mr Cameron, stating a few home truths.

Here’s my interview with Colin… A man with Aspergers

Enjoy.

Claire… Hi Colin, firstly let me thank you for taking part in the interview and also a big thanks for your continued support with the facebook page ABWA by way of the great advice and input you give within the page. So my first question to you is…

Would you be so kind to Describe yourself  in five words?

Colin… Obsessive, Stubborn, Shy, Intelligent, Creative

Claire… It’s my understanding that you were diagnosed as being on the spectrum as an adult… If you don’t mind me asking, how old was you when you were diagnosed and what diagnosis was you given?

Colin… I Was diagnosed at age 44, with Aspergers Syndrome

Claire… Can you tell us a bit about how the diagnosed came about? Did you always know you were somewhat “different” to your peers as a child?

Colin… My diagnosis came about through a councillor I was seeing, through talking to me about my past and how I interact socially. He thought I might have aspergers , so then arranged an appointment for me to be assessed to see wether I was or not. as for knowing if I was different or not, yes I did feel different even though I didn’t know exactly what was wrong, I always put it down to shyness and lack of self-confidence and being a little eccentric.

Claire… Wow I’m guessing that the diagnosis was quite a shock then?

Colin… Yes the diagnosis was a shock, even though it confirmed a lot of behavioural patterns that I had put down to something else…  The meltdowns, obsessions, not being able to talk to people etc.

Claire… Has a diagnosis changed anything for you?

Colin… Well if anything the more I know about my condition the more I feel im not in control. I was told that I would either just get on with my life without a hiccup or it would take over my life. Well, its taken over my life, ive let the diagnosis affect me. if that makes any sense.

Claire… That’s a really interesting statement… Do you think in a way you would have been better off not knowing then?

Colin… In my case I would have to say yes, only from my point of view, others might say I havent really changed at all, that the diagnosis has highlighted that it’s a condition not an attitude

Claire… How did family and friends react to the news?

Colin…  My family don’t know about my diagnosis. I havent been in touch with them for six years. I’ve not many friends at all in fact the ones I do call friends live over a hundred miles away but I haven’t seen them in five years, they don’t know! The friends I have online I’ve only told a select few

Claire…” I’m very sorry I didn’t know that you had not spoken to your family for so long and your friends live so far. I’m pleased you have those few people online to be open with (Me included)”

What would you say to the ignorant people who claim our children on the spectrum will grow out of it?

Colin… I would say that my case proves that you don’t grow out of it, as I’ve been told you either have aspergers from birth or you don’t have it at all, well for 44 yrs I wasnt diagnosed but when I was I certainly hadn’t grown out of it from childhood, it just didn’t suddenly appear it’s always been there I just slipped through the net for many years.

Claire… I mean all children with ASD become adults with ASD and sometimes I think people forget this. What do you feel is lacking within the current system in terms of support for adults on the spectrum?

Colin… There is no or little support from the government for adults, cause its taken as read that the diagnosis will be realised early enough to support them at an early age the support seems more geared towards children than adults, we are left to really fend for ourselves. There is a charity drop in center I can go to, but no 24/7 service. Basically I was given a diagnosis and go.

Claire… “I would have to say that this concern is voiced by every adult on the spectrum that I’ve come to know. It would seem the government just ain’t “getting it” either that or they don’t give a S**t!!!”

If I told you Mr David Cameron reads the blog (u never know lol) what would be your message to him?

Colin… We adults deserve support just as much as anyone else! Sweeping us under the carpet don’t help anyone, everyone talks about inclusion but if it cost money or difficult then you can forget it!

Claire… As an adult with AS can I ask you… Do the meltdowns, anxiety and extremely challenging behaviours improve with age, are you better able to control such  meltdowns now?

Colin… In my case the meltdowns still happen, but are less frequent than they used to be. As for controlling them I’m not sure I can control them… All I can say is that they don’t last as long as they did.

Claire… If you could go back in time and do things differently knowing what you know now what would it be?

Colin…  Not sure to be honest, I would have liked to have finished my degree in mechanical engineering, but let things slip. Not sure if that was down to my aspergers or not.

Claire… ” I would say it’s never to late to finish the things you started Colin”

How was your school life growing up?

Colin… I Was bullied at school, was a quiet and shy child who was quite happy to play on my own as well as with others. My obsession with music was noticeable to me at an early age about 10 years old.

Claire… “Oh my goodness I’m now getting an insight into the mind of my own little Aspie! Little man is 10 totally obsessed with buses and nothing has ever come closed till…… Now that is. He is a fan of Bruno Mars has stored a huge amount of info on the guy and after getting his album two days ago has memorised every song lyric for every track on the album. He can’t sing through and can drive me a bit potty with his singing lol”

So a quick change of subject! What do you think of our current educational system given that ASD is much more known today?

Colin… I Can only go from my own experiences, since I left school in 1979, can only say that the educational system is slow to react to things even when highlighted. Bullying is still rife now so what does that say?

Claire… “No Comment Colin”…. You know what I think!

So… Do you have any “special interest” Passions that take hold of you? Are these long-standing or do they change over time. Is music still a big part of your life?

Colin…  Music has always been a big part of my life, I’ve  been collecting music in various formats since I was 13. I’m obsessed with downloading music, writing poetry. All other obsessions come and go.

Claire… When are you happiest?

Colin…  Plugged into my iPod and writing poetry.

Claire… Do you or did you have Sensory processing problems as a child? Have these changed, improved or just been replaced?

Colin… Noise affects me and always has…  Just different levels or situations are more difficult to deal with than others, people eating, dogs yelping, get woken by the slightest noise so my sleep pattern is bad.

Claire… “I’ve always thought that Little mans father is an undiagnosed aspie and his pet hate is hearing others eat. You crunch he freaks out”

So, they say some people with AS have a high pain threshold! Do u? Little man don’t really get ill or catch bugs that often (unlike his younger sister) but he feels pain “big time” (if there’s blood we are in trouble) so, this don’t apply to us lol.

Colin…  Not sure if I have a higher threshold for pain, but I have a high threshold for dealing with low temperatures, don’t seem to feel the cold as deeply as others do.

Claire… “Yep Little man is the same…. No coat in winter and don’t take it off in summer”

Did you have many friends as a child and do you now?

Colin…  None, that’s my problem I don’t seem to be able to keep friends. People come into my life and then I let them fade away.

Claire… How do you find social situations?

Colin…  Still difficult, even with people I know.

Claire… What subjects did you excel in at school and what ones never made sense?

Colin… Technical Drawing and Maths.

Claire… Interesting… Can I ask is it mental math that your good at? Just that little man is ace at mental math ( better than me) and other parents have reported the same.

Colin…  Yes mental maths… I used to go to the shops at age 5 for my mother and was always able to count and know it was the right change I was getting for the items I was getting. still don’t use a calculator much in daily life.

Claire… It’s said by some that those with AS lack empathy! What do you say?

Colin… Maybe we lack social skills, but we are loving we just don’t know how to express things well, as for myself I express my self better in my poems than actually speaking etc

Claire… What advice would you give to an adult reading this that suspects they are on the spectrum? Is it to late for a diagnosis, is it really needed?

Colin… It really depends on his or her situation, whether it is affecting work and home life never too late for diagnosis.

Claire… What advice would you give to a child/teen that is struggling to come to terms with their diagnosis seeing themselves as someone who is  “abnormal” with very low self-esteem?

Colin… We are normal, we just look at the world in black and white rather than shades of gray, we can be too trusting. but as people we are no different from what is described as normal! We want to be loved, laugh, etc

Claire… “I just showed this to little man and he said thank you… He likes that!”

Colin… Tell little man I said thank you, us Aspies stick together.

Claire… What advice would you give to parents like me raising a child on the spectrum?

Colin… It will be hard, but if you keep giving your love and support as much as you can, the rewards will come, you will see your child grow into adulthood… I’m not saying with less problems but with more understanding and maybe more control.

Claire… Finally, I’m a big fan of your beautiful poems… I’m wondering if you could write one for us to sum up how life on the spectrum is for you. This would be a great ending to our interview.

I am seen but not seen

They see the book cover

Not the story inside

I breath, I bleed, I think

But I am not part of the crowd

My world is black and white

I can not understand

Subtle shades of grey

Warm bloodied

I am still bereft of love

For emotions are hard to fathom

What is easy for most

I find a mountain to climb

Do not pity me or scorn me

Do not hate me or ridicule me

Born from the womb

I am of flesh and blood

I am human too

By Colin Weir

That was fantastic Colin 🙂 Thanks again for giving us all an insight into the mind of a man with Aspergers.

Please feel free to leave your messages for Colin and I will see he gets them. If anyone would like to contact Colin you can friend request him on Facebook. Let me know and I will be sure to pass you the link.

Tad Auty.. A school excursion.

It’s been a while since I featured a guest post on the blog. I decided that I wanted to hear from those who had a deeper insight into the world of autism, but even more so Aspergers! It was a few weeks back when I received a friend request trough Facebook, by Tad Auty. Tad a 40-year-old Australian female who is on the autism spectrum (diagnosed with Aspergers), was also an active member on the Facebook page ABWA. I noticed that this Inspiring, clever lady was dishing out some pretty good advice! Members were gaining a great insight on what life was like for someone on the spectrum. I read a comment that Tad recently made on one of the treads on the group wall. It was started by one of our page admins who wrote about a social situations encountered by her young son who has a diagnosis of AS. Tad’s comment was a real eye opener for many parents reading it, Myself included. So with this I decided to invite her to write the next Guest post. I was delighted when she agreed, and with a topic in hand (School excursion) Tad got to work in producing the following piece.

I hope you enjoy! I know I did 🙂

Claire Louise

The remainder of this post is written by Tad Auty, a 40-year-old mother diagnosed with Aspergers and living in Australia.

I was asked to share with you, how I feel, how I see things…as a hope that it will help to explain how some of your children may feel in certain situations…

I’m a 40 year old female who was diagnosed with Aspergers at 33, after many years of depression and feeling like I was weird, wondering why, if I was good at jigsaw’s, I couldn’t figure out how to “fit in”. Why had I ended up being a divorced mum of 3, when I thought I was going to be a “Ologist” of some sort! (as a kid I went from geologist, to archaeologist, psychologist, anthropologist, theologise….anything with “ologist” interested me) Why was I so clever & strong in many ways, but SO DUMB in others, unable to do simple things that others can. Like be quiet! I had read about autism, (I had read about a lot of psychology as a small child, trying to figure out how I was “supposed to be”) but what I had read about autism, was all about non-verbal people. When I moved in next to Johnny, my eyes were opened.

Johnny was 4-years old when I met him. He wasn’t verbal, he flapped and shrieked and liked lining things up. My children loved Johnny and had a real gift at being able to play with him in a way that didn’t upset Johnny or get into his space too much. I would watch Johnny and was able to predict a lot of the time, what he was about to do. People would say “I wonder why he does that?” and I would reply, “Well I can’t be SURE, but I did that too, and it was because of…..”

Johnny only ate certain shaped and coloured food, and you couldn’t changed brands on him…..I would say “Of course you can’t change brands!!” Johnny would line up blocks and not let others join in. People would say “He wont let you join in”, but after weeks of watching, I worked out his pattern and system! I knew I had to drag the block on the carpet in a perfect straight line, then lift it to my lips and brush it across them, then slide the block back in a straight line along the carpet. I was so nervous when I tried it, as he watched on about to shriek or disengage at any second, but he watched on, and then saw what I did, THOUGHT about messing all the blocks up (as he does when people ruin his rituals), then he paused, looked at me again (like he was saying, “oh she has made such an effort to do it right, I will let her play”) and he went ahead and put his next block in place.

It was because of Johnny I read a (more modern) book written about autism. As I read it, I was thinking “same as me”, “that’s how I feel”, “OH so auty people can talk TOOO much!!”. I had the experience of relating somewhat to books on bipolar/schizophrenia/depression/eating disorders, etc…… But this autism thing, I didn’t just relate somewhat, it was like reading straight from my private thoughts and feelings. If I had to highlight the relevant parts, I may as well have dunked the book into a bucket of pink ink!

That was when I realised what was going on with me…And that I wasn’t alone. That Johnny and I were alike for a reason, (though so many judge him as being low functioning, because he is more disconnected from the world of people than I am, I do not like the high/low functioning label, as I think it’s a value judgement. If our society was different, and didn’t expect people to all be the same, Johnny would be valued EVEN if he just wants to line up blocks and sit on a hill in the wind in a breeze! He is functioning quite well in his own way, and is a happy person most of the time:-)

I went off to see a Psychologist who specialises in autism, and was diagnosed not long after. Life has been a lot better since. I still have the same brain, but I understand how it works now. I understand more now how NTs work too. I have learnt how to realise what “feelings” are and talk about them when required. And though I still have struggles with feeling disconnected socially/emotionally or frustrated with my neurones at times, I know now that I’m not a lone alien. I still feel like I’m from another planet, but it’s Ok, because there are heaps more of us here, and now I know that, I see them everywhere.

I thank fate/nature/God for introducing me to Johnny….and all of the advocating I do, I do for Johnny! Because he cannot speak for himself, and though I’m not him, I do empathise with him and his mum and dad….and all the other Johnny’s (and Sally’s) and their parents. I feel pretty useless at a lot of things, but words are my thing, and finally my private world, and my words, can actually connect me to people, help others feel less isolated, and likewise, I am less isolated, from meeting so many other great people who have felt this way too.

I decided to choose a memory from my teen years to share with you…
Something so simple to many people…. A school excursion, Something the other kids at school looked forward to.

When I started in year 7 (aged 12), I was a “mature, well-read, little lady”. (So one teacher said in my school report…. Gee I had her fooled) I drifted about school, had a few “friends” (I defined friends as “people who tolerate me”) who I sat near and tried to say the same things as. Outside of school I was a free child….I was more relaxed….I was a lot
happier around older people and my little boy friend from down the road. I didn’t have to pretend to be normal around the people at home. I was accepted as I was.

School was another thing though. Being a female meant I had to hang out with girls at school. There was too much negative attention for talking to boys…people would make it into something romantic, whereas I just wanted to hang out with boys because I found them less judgemental of me. I was one of the few kids at school who were actually there to learn! I liked school and most teachers! (MOST…the others suffered though :)) I would have been a very happy kid if there were no other kids at school…if the teachers were all there just for me! So when other kids liked to get to school to see their friends and looked forward to lunch breaks….I actually only looked forward to classes…and dreaded lunch breaks!

So I wandered about at school for years keeping up a facade of a perfect little robot….(I was never perfect at it though)….I was getting good marks, but I was suffering from anxiety, insomnia, self loathing, loneliness, isolation inside myself….I had no REAL friends. My boy friend from down the road, who had been my bestest buddy in the world since I was 4….. His parents won tatts lotto and they moved away. I had those “friends”, but their company very much replied on me conforming to their ideas and beliefs, so I felt I wasn’t being authentic.

THEN came along Sally! In year 8 Sally arrived at my very nice wholesome catholic school…she had a short skirt and wore makeup and had an ATTITUDE! But…I also noticed in class that she was very bright. She was also absolutely instantly rejected by everyone in the class, male and female, AND many teachers. I don’t know if it was that we were born only two days apart, or that she was outwardly expressing the depression that I was hiding, but I gradually befriended her. She was very untrusting and hesitant at first, but once she realised this little geek was for real, she and I became friends. (She said she was Fonzie and I was Richie Cunningham..I think I’ll a little Potsy and Ralph Malph too)

When Sally appeared, I had finally found someone who was witty and clever and questioning…someone who understood feeling left out or judged. We were quite the odd couple and my other “friends” told me I was to stop associating with her because of how she looked and her reputation. Though our schoolwork was great, teachers started separating us in classes. I think they didn’t want me “tainted” by her, but the truth was, she was actually helping me to speak and be myself. I wasn’t interested in going out and partying or chasing a heap of boys….. Poor Sally had abuse issues and was acting out her own thing. I wasn’t like that, so I didn’t go out with her outside of school. I would visit her house, but not when she had a party.

SO…..Our school excursion was coming up. The teachers announced that the camp would be divided into two groups who would go separately to camp. The teacher read through the list, obviously grouping people with their best friend groups…Except Sally and I. We were put into separate groups. I was put in with my “friends” from the year before who had been excluding me since I was still being a friend of Sally. I had never really looked forward to camps, but this one I was dreading now I was completely isolated. And it was very obvious the staff had gone out of their way to do that.

CAMP….
So first I have to face that horrible thing of getting a seat on the bus. People saying “No this seat is saved”. So I sat near the front…and could hear people speaking about Sally. Saying mean things….I knew she had issues, but what they said was off the mark. And they would say it loudly and would then say my name. I wanted to die. I felt nauseous and spoke to one of the teachers about geology to make myself block out the conversations behind me.

We were then put into groups for our rooms. Of course I was put in with the nasty little girls who the teachers thought “Would be good for me.” I chose a bed and was then told I couldn’t have that one… One of the “boss” girls wanted that one. I was put in the bed on the other side of the room. The girls were sometimes including me in conversation, but half the time I couldn’t tell if they were being mean to me or nice. They would say things about my clothes or hair…and then laugh and if I looked confused, they would say  “No I didn’t mean it bad” and then laugh again. These girls were sweet little Catholic girls…sweet to who THEY decided was “one of them.” The girls all wore heaps of perfume and sprayed deodorant constantly. I would have to hide my head under the blankets, which of course made them say things about me making a big deal out of nothing. (Nausea, headache, brain gone fuzzy…nothing to them maybe!)

Mealtimes were hell. I am still a fussy eater now, but back then I was even worse. I ate butter, not margarine. I didn’t eat fruit or veggies. I didn’t eat pasta. I didn’t eat rice. I didn’t eat anything other than meat and potatoes basically. The thought of having those textures or colours in my mouth made my adrenaline kick in and I’d feel sick and shaky. I knew how to not eat things….just leave them on the (contaminated by vegetables) plate, but sometimes, if the meal was spaghetti for example, I didn’t get to eat at all. Depending on which staff member I asked, some would say  “Too bad You get what your given so eat it” Which of course I wouldn’t. I had a nice teacher who would make me a sandwich if I asked sometimes. Otherwise, I had my secret stash of food in my bag that mum had packed. She knew I would need energy on camp, and she knew that I may not eat if she just trusted the school to feed me. Other kids would sometimes make a big deal about what I ate, or try to make me try things…..Or put other things on my plate to freak me out. There were always comments about me being fussy, like I was precious. But I didn’t want filet mignon! I was happy with a sausage in a piece of bread. I just wanted to eat and have no-one take any notice. I still hate dining out and avoid dinner parties…my friends only invite me if they’re having a BBQ :))

Then came the “camp activities”. Oh how I  hated those activities!!! One was called Ambulance…. Everyone had to jump on each other and hold onto others in a big knot of people…. Then the “paramedics” would try to drag them out one by one. I would just hold someone’s shoe on the edge and let the paramedic pull me out first. That was one competition I had no desire to win!!

Another activity, you had a short straw in your mouth, and had a lifesaver, donut shaped sweet, on it. You had to turn to the person next to you and lean in close and transfer the lifesaver to their straw in their mouth. The NT kids thought it was a riot! I would just drop my lifesaver and be out straight away on purpose. I hated circle activities with nowhere to hide and even just the part at the start when they said we had to hold hands to make the circle.

I DID enjoy one activity. I liked the small group discussions about religion/philosophy, inclusion, etc. The only trouble was, anything I said in the group, and the group may have even been really accepting of it or said it was good, I would get outside, and the next thing, those people in my group had twisted something I had said and the other kids were picking on me about it. So it wasn’t even safe for me to have a real discussion without the bullies wanting to use it against me.

The worst thing was “free time” though. This included a big mud fight once. I was holding someone camera so no one dragged me in, then I ended up holding all of the cameras (and taking the photos, which is actually how I started to become a photographer seriously, I learnt that if you TAKE the photos, you are never in them 🙂 AND people don’t push you around if you are holding the cameras, AND if you make sure the photos are good, people will ASK you to do it again!

Other free time activities that I was petrified of were boy/girl pairing off and kissing, etc. I saw how girls were picked on if they said  “No”, but I wanted to say No, but I didn’t want to be called “frigid”, which was the BIG insult, so I made up a fictional boyfriend. SO instead of being called frigid for saying no, I suddenly was being labelled a tart! (And I didn’t even kiss a boy until 4 years after this!)

Off to bedtime and I have to lay and listen to the other girls talk as I go off to sleep. When they think I’m asleep, they proceed to whisper about me and how I don’t eat certain things, what I said, how I didn’t want to kiss the boy, etc. I was crying and dying inside and just wanted to be at home! Sisterhood! Phooey! Not if you’re not a full blood sister apparently!
This was the last school camp I went on. They allowed Sally on one camp with me…where there was no choice, so I went to that one. And even enjoyed a lot of it. There were still those same moments…..People are people. There were still bitchy comments occasionally, and awkward moments for me when I had to hide for a while, BUT when I had Sally there, half my anxiety was gone, because I wasn’t alone. Alone we are far more vulnerable to bullies. And bullying isn’t always obvious…Especially with girls. They can be amazingly evil with just a look or using they’re networking skills…. I wished I’d gone to a boys school, but I know they wouldn’t let me in 🙂

(Sally Update: Sally is now a lawyer and high up in law enforcement. She is far more successful, together, happy and wholesome than those who judged her…Once she was an adult, and got past her abuse, she did well. The others, once they got out of school, started wearing mini skirts and lots of makeup 🙂

Tad Auty

Do you have a comment or question for Tad? Do you wish to find out more about this  amazing woman, mother, Photographer, advocate, & writer? Feel free to leave any comments or messages for Tad and we will make sure she gets them.