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
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
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.