NAS blogs- Robyn

Not so holiday Blue

noreply@blogger.com (National Autistic Society) — Mon, 21 Dec 2009 11:46:00 +0000

Whilst Robyn does have blue hair she's not blue this holiday.

This week I played my first ever London gig at the NAS Christmas party, on Thursday night in Hoxton, the music was provided by the Pig Pen team, with Gabriel choosing all the acts, nobody need worry about whether the music would be good or not( he has very good taste), I will be playing again ( I hope).

I have finished a piece of art work for a recreational centre in New York, and started on an Evan bigger canvas, I am hoping to have an exhibition soon.

This year is the first year I have enjoyed the run up to Christmas as an adult, I have been to 3 Christmas parties (never heard of) and have found my niche, I like being around people on the spectrum and people that know about it makes life a lot easier.

I hope you all enjoy the holiday season.

Robyn

This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing companysecretary@nas.org.uk
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG.
www.autism.org.uk

America

noreply@blogger.com (National Autistic Society) — Thu, 17 Dec 2009 14:29:00 +0000

Robyn has come back from the US and is planning on going back next year, Robyn has started art therapy and will be on a UK tour in February

America sleep an a UK tour.

I’ve been back in the UK now for a month, and have started my art therapy, which is very hard emotionally, because it opens up experiences that I would rather of not remembered because they are painful, but it does seem to benefit me knowing I am going to have that time for myself without feeling pressured,

I’m going to be touring the UK with the NAS and Learning works in February the dates are;

Wednesday 3rd February 2010 Warwick

Thursday 4th February 2010 St Albans

Wednesday 24th February 2010 Sheffield

Thursday 25th February 2010 Wolverhampton

You can book here www.learning-works.org.uk

Each course starts at 9 10 and finishes at 3 45 , Ill be speaking with Chris Barson and Jenny Ravenhill the whole day is called “promoting well being for pupils with autism” its aimed at;

SEAL coordinators

Inclusion managers

Education psychologists

Mentors

Lead teachers of citizenship and personal

development

SENCOs and learning support coordinators

LA support team members

Learning support staff

America

America was a really busy time, I did 11 talks in 26 days and went to all kind of places I went West to East coast, and met lots of family’s and support groups, the movement to cure autism is from my point of view bigger then the UK one, and their health system is very different since they have medical insurance the drug companies advertise on TV I’m not sure that this really gives people better choices because as a patient your not a trained Doctor, but it is interesting to see the differences.

Blogging from America

noreply@blogger.com (National Autistic Society) — Wed, 21 Oct 2009 09:12:00 +0000

So its been a week now since I arrived in America. It was a big journey, and the large airline that I had to have a wheelchair, when what I really needed was someone to wake me through the airport and warn me of tasks like taking off my shoes and emptying my pockets before I had to do them

And generally what you get one side i.e UK you get the other in this case US, whilst having a wheelchair does benefit my Cerebral Palsy and it does help me get through faster because sometimes they’ll open up a separate line for you at security or just put the stuff through themselves ( bags etc)

But once in the US I have be welcomed by an amazing family

I have spoken all around the San Francisco bay area including San Jose, Berkley, Daly City and San Francisco itself.

It’s been a very interesting trip so far, I have another week here before heading to LA,Pittsburg and New York

I also want to make you aware of the NAS's campaign which is called Don't write me off and aims to highlight and make changes to help those on the spectrum to get into work or apply to ESA ( Employment Support Alliance)

It has a website www.dontwritemeoff.org.uk

Holidays

noreply@blogger.com (National Autistic Society) — Mon, 12 Oct 2009 11:31:00 +0000

As a kid I would say the day before I went on holiday was the last day on earth, as if i was going to blast off into space and maybe find another planet with other people like me on the way in traffic jams or in the queue to go on to a ferry.

I would write notes and hold them against the window to fellow children, my parents told me off for this.

But maybe this communication was what I craved in my everyday life, I remember being happy in primary school and getting an apercotation for passing in time as at the end of the year we would go to the leavers church service and assembly and near the beginning of the year there was my favorite service havest, all the yellows and oranges blue skies and sunshine.

This week I had my mental health catch up session with the registrar and then got referred to art therapy which I attended on Thursday

The first few sessions are asesment sessions, to assess your needs from the arts department which included music art and drama where they get a case history of your life. It is different to seeing a registarar as there is more talking space, I also got to draw :)

America here I come.

Robyn's blog... Ear Ear

noreply@blogger.com (National Autistic Society) — Fri, 02 Oct 2009 09:32:00 +0000

Yesterday I spent all day treating my ears.

A few months back I got the butterfly on my stud earrings stuck in both my ears, I didn’t realize it had happened and thought they had just fallen out.

The night before last a piece of metal appeared out of my era lobe, Oh Dear!

So the following morning, I rang my GP, but couldn’t see a nurse until the following day, so they suggested the walk in centre.

So I went to my local walk in centre, I spent a lot of time in walk in centres n Manchester when I lived there and sometimes the treatment is really great.

The Doctor was very friendly and understood that I was hypertensive and asked a nurse to get some forceps which were huge.

I expressed panic at the low pain threshold I have, so he said go to A & E and they will give you local anaesthetic, he suggested a quiet A&E but I went to St Thomas’s because I knew it as I’ve been there lots of times before.

I was there for 4 hours, the Nurse I saw was quiet good, he did seemed to understand my fears and gave me some numbing, then the local aesthetic then about 6 squirts on each ear of freezing spray and this was enough to allow him to remove the butterflies.

I think the main thing he could of done better to improve upon was telling me what he was going to do and showing me the equipment without hesitation.

I had to press him ( ask over and over again) what he was going to do, till he told me he’d make an incision in my ear with the scalpel and use the end of it to pull out the butterfly and cut away any skin embedded on it, when I due that it was far better then imagining this giant drill coming at me and big pliers’ and I thought 4 hours was good waiting time.

Interestingly the Doctor I saw at the walk in centre had met lots of people with Asperger’s in young offender units 9 rather then a stat his 10 thousand patient practice which has around 3 patients with Asperger’s who are mostly children, hmmm I’m not sure that’s right certainly raises some questions about diagnostics)

Robyn's blog ... The Mental health assesment

noreply@blogger.com (National Autistic Society) — Tue, 15 Sep 2009 09:03:00 +0000

Synopsis : This week Robyn goes to see her Community mental health team for her first assesment.

You have only got until midnight tonight to fill out the Autism strategy consultation, you can do it online and there's an easy read version I can't urge you to do this enough. You may think your contribution would be so small that its not worth doing but there are many pieces to a 1000 piece puzzle without all of them the picture is uncomplete and so the Autism strategy consultation works by the same principle that it is important that we as those effect by ASD (or ASC) let the goverment know what its like. Here's the link; http://adultautismstrategy.dialoguebydesign.net/

Of course regular readers will know I went to see my local community mental team, I was impressed by the receptionist. She happened to find me standing outside looking lost and helped me to the second floor. I was too anxious to try and pronounce my registrars name but handed her the letter. I had asked different people who see me in different situations how my anxiety effects me and written it down but she wasn't intrested in that. I saw her for 1 hour 30 mins approximately, and she asked me about my childhood and my life now. I asked to be referred to the local hopsital for individual art maybe music and movement therapy, and she said YES!!!! She also talked about putting me on anti depressants and that I should take my beta blicker everyday. She is going to put me foward for some CBT ( But I couldnt get her to understand why it was important to have a practioner that knew about and understood Asperger's) I felt her knowledge might be a bit limited on Asperger’s, but I guess I got what I wanted, but whether I can see some that knows about Asperger's only time can tell the next appoitment is in 3 weeks, ( the week ebfore I go t he USA).

Robyn's mental health blog...

noreply@blogger.com (National Autistic Society) — Tue, 08 Sep 2009 09:33:00 +0000

Syphonis Robyn talks about her mental health. 1 week before meeting her community mental health team.

This week has been a little better, Bill is also back from his training course in spain, the cotoruity will help, I have 1 week left until my appointment with the community mental health team registrar, we are going to sit down and make a list of the things we want to discuss with, and the type of support we think might be helpful.

I am nervous, in case I cant articulate how bad it can be sometimes, but I also feel that others put pressures on me by wanting me to conform and the lack of stable routine.

Robyn's blog...

noreply@blogger.com (National Autistic Society) — Tue, 01 Sep 2009 09:27:00 +0000

I called the community mental health team, and they made me an appointment which is in 2 weeks, they sent me though a letter and a booklet about what they do,

I also got a call from the art therapy dept in my local hospital who said I should ask to be refered, I am very impressed, my sleep is still odd though. This week I also sold a painting for the first time, its called Townscape.

Robyn's blog...Blogging in future.

noreply@blogger.com (National Autistic Society) — Mon, 24 Aug 2009 09:18:00 +0000

This is this week’s blog, I know this is very personal about my mental health but I feel it important to tell others.

I went to see my GP this week, having felt depressed ad anxious from my early teens, and new living with people and feeling like my life is really worthwhile now, I felt it important to do something different.

My anxiety as an adult tends to come in peeks, I am anxious a lot but sometimes probably once every 3-4 months it gets to the point where I can sleep for small amounts of time and become unable to make descions well, I also become depressed and feel that I cannot move forward, this can last for 3 weeks with the sleep going from 15 hours to 4 hours in a day or two, leaving me feeling lethargic and frustrated. Normally in these periods I can paint, and am creative in general.

This is fine to some degree but feels awful and means I have to take some time off work, so I would like to be more in control, I’m also aware this might get worse as I grow older so having a better understanding now will hopefully help present problems in the future,

a fortnight ago I got very little sleep and felt very anxious, and had to take the day off work, I phoned my GP who gave me a telephone appointment 30 minutes later, the GP I spoke to referred me for initial assessment and that will take about a month to come through then Ill be put on a 6 month waiting list for CBT therapy which I’ve tried before which wasn’t effective however perhaps with someone who knows about Asperger’s it may prove useful for learning how my thought process works and catching any bad patterns before they have an impact.

We talked about different options and he gave me useful advice on sleep we discussed maybe the use of antidepressants in the future and sleeping tablets as last resorts, in the mean time I suggested art therapy, and he gave me contact numbers, however referrals go through the community mental health team but according to my local health trusts website they only work with people wit serve or enduring mental illness (do I tick that box?), a friend told me about a charity in North London who run art, music and other therapies and activities so I got in touch with them and they were keen to meet me.

I got a letter through this week asking me to telephone and make an appointment to see the community mental team ( no typo there really the mental team) so I guess I do have a serve or enduring mental illness after all.

Having lived and known people with mental illness and difficulties all my life I have learnt to be aware of myself.

Although now 3 weeks on and I am feeling better and am able to go back to normal almost.

Robyn's blog... Meeting teachers

noreply@blogger.com (National Autistic Society) — Mon, 17 Aug 2009 09:05:00 +0000

This week 2 special things happen, the first being that the sunday times magazine featured an article about Autisum and what happens to Adults, 26% of people in the NAS 2007 survey thought Autisum was only a childhood illness and so there must be a lot of other people including some proffessionals like GP’s and SENCO’s who don't consider what will happen to their patients, pupils etc when they get older.

This week I met with the teacher who ran the area special needs unit that I was in until I was 12, I last saw her at my 9th brithday party, I wanted to met her and see what she thought would of become of me, did she know what a big impact she had, had on my life, how did she get into teacheing and what did she do now.

I found it absolutely incredible that in 14 years she had barley changed, and was just as amiable as I had rememberd her, it was absloutly wonderful to met with her and her husband.

Although I was suposed to hear that her view for what I would do after school wasnt all doom and gloom, although I had been teaching the other kids to use the computer so the idea that I might be some kind of teacher was deeprooted, I think I'd like to meet more of my old teachers beacuse the experiance was very thought provking and I was suprosed that I got on so well, anyway you can read the sunday times magazine article;

http://women.timesonline.co.uk/tol/life_and_style/women/families/article6794806.ece?token=null&offset=12&page=2

Robyns blog...talks about technology

noreply@blogger.com (National Autistic Society) — Mon, 10 Aug 2009 10:51:00 +0000

Robyn is on BBC Ouch podcasts talking about iphones (at 49 mins) and computer hacking (at 53 mins). Podcast 42 06 August 09 http://www.bbc.co.uk/podcasts/series/ouch#playepisode1

Robyns blog...

noreply@blogger.com (National Autistic Society) — Tue, 04 Aug 2009 11:44:00 +0000

This week for the first time since I was 3 months old I had a blood test. The last semi successful one was a few days after I dislocated my knee cap. They were testing me for Fragile X and they numbed my hand so much, that I couldn’t hold my crutch so I went to the room by wheelchair (wheelchairs I have found make me feel powerless.) The nurse got a nurse from the special needs baby unit. When she put the needle in it felt like I had small shards of glass being sucked and pulled from my arm but they got just enough.

Another failed attempt came from a phlebotomist who patronised me by saying things like "and how old are you?" as I was spooked when she wanted me to put my arm on the table, but my local phlebotomist is amazing. Bill pre-warned her about my need for a blood test and they booked me a double appointment. First up we had a go on the scales and talked about BMI and food then we looked at a traditional needle and a butterfly needle and handled them. Me and Bill closely examined the end of the butterfly. It has a scoop and plastic wings and a tube. Then we put the butterfly on Bill’s lap and I tied the tourniquet round my arm. We talked about the funny colour my arm went, the pins and needles and slight pain and how it would only do you harm if you wore it all day. Then we put a pillow with a cover over it on my knee and laid my arm out and found a vein. Then a new butterfly sat on the pillow and the phlebotomist cleaned my arm with a mini baby wipe, then we agreed on a count of 3, she put the needle in and if I said stop it would take 1 second to pull it out. My hands were sweaty and I squeezed Bill’s hand as the needle went in and the phlebotomist checked I didn’t want her to stop and she filled 2 tubes. Then we had a count down from 10 to 0 and she pulled it out and gave me 2 pieces of cotton wool and a plaster. Then me and bill went home, I was tired so went to sleep. So the secret is to get the needle in deep and do lots of talking and asking permission, giving the person with autism control.

Robyn's blog... It's been a hard week.

noreply@blogger.com (National Autistic Society) — Mon, 27 Jul 2009 10:48:00 +0000

I hate it when people don't understand why I find it hard to do some things and not others, I get so anxious when I have to cook or deal with toxic cleaning products, knifes or gas. I'm no good with risk, and would rather stay away from things I don't know about or feel conifident with because if I did them and failed I would be less likely to try other things and try again, I'm sorry to be so negative, but this week Iv'e been ill and got behind. But other peoples lack of understanding sometimes annoys me. Robyn

Robyns blog...

noreply@blogger.com (National Autistic Society) — Mon, 13 Jul 2009 08:54:00 +0000

I am very sad, Bill left on Thursday and whilst he did come back on Sunday, not having support all the time is not easy, I find it very hard to make choices and think through decisions, my flat mate and I miss Bill when he is away, I have been preparing hard for America and look forward to announcing my plans in the next week.

Robyn's blog... Nobody on the online world

noreply@blogger.com (National Autistic Society) — Mon, 06 Jul 2009 08:44:00 +0000

As Robyn contemplates homelessness, the emptiness of Facebook at 4 24am
Bill ( Robyn's life coach, lanlord and friend leaves and Robyn looks
foward to visiting him for the weekend Nobody is online on Facebook The
world is very quiet at 04:24am on a sunday nobody is one facebook I am
all alone in my online world, I have just watched the 2 pat seris on
homlessness whic was on the BBC iplayer and aired on BBC 1, at the end
one of the people whom took part said that being homless wasnt just
about being without a roof over your ead but being without a family , I
can symphasis with this statment, whilst I ahve always had family on the
end of the phone I ahve been through some very lengthy periods where I
havnt seen them and have been very alone, and oddly what changed things
for me was being self employed for me that enabled me to have control
over my life and build up a social newtork is allowed me to talk to
people, and have somthing to asay and as you probably know conversations
often vere off on gentle slopes in other new directions, but that little
bit of difference in me creates intrest and conversation helping me not
to be lonly, also email and online communities are helpful but people
benfit from seeing people face to face and building up community this is
important beacuse our support network keeps us stable, one other
articipatnt said he didnt know what he would do without his wife, I
think that often it is very hard for people with Asperger's to fele part
of a community or family but it is important to do so.People with
Asperger's have alot to offer just as neuro typical ( peopel with out
autsium do) when I was 15 I thought I would be a drug addict and homless
by the time I was 21, Im 22 now.

This week Bill leaves for Wales, for 4 days a week, he says me and our
other Aspie flat mate can go and visit him for the weekend.I actually
find leaving london quiet hard but this week I gave talk to a family an
school in Essex, I was delighted to be asked after a recent 5 live
interview and throughoully enjoyed visiting the school and giving my
talk because I felt like I made a difference,

---------------------------------------------------------------------------------------------------------
This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing companysecretary@nas.org.uk
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG. www.autism.org.uk

Robyn's blog... This week, I spoke at an NAS event

noreply@blogger.com (National Autistic Society) — Wed, 01 Jul 2009 11:00:00 +0000

This week, I spoke at an NAS event for people who have autism and wanted to find out about how they could campaign with the NAS. I think it is important for other people with Aspergers to do something to support others, maybe this is as simple as e-mailing your local MP or writing to your local newspaper, or as big as writing an article, giving a speech or being in the media. I think it is important because there are so many misconceptions about autism, for example 26% of people surveyed for the think differently about autism report did not realise autism is a lifelong condition. Clearly this means people are very short-sighted about providing support, and how they treat adults with autism in general, and what is almost always underestimated by people without knowledge or experience of the condition is the difficulties with transition from child to adult services. This change does not map directly from one service to another, instead often individuals and their families have to argue for services they previously had, or make do when there is nothing to fill the deficit.

I feel that by letting people know about autism and how this effects me as an individual, the clients I work with and my world view, that this is one step which I can take as a responsible and conscientious human being to helping people become more aware of autism, I would also like to say that if anyone is interested in the slightest they should contact the NAS because there is no obligation and finding out about what you can do personally may well be interesting, thought provoking and may even help you. For me - I have gained a lot of confidence and understanding of autism and myself and I am very proud to be involved with the NAS and I very much hope I will be able to continue to support them.

Robyn's Blog...

noreply@blogger.com (National Autistic Society) — Mon, 22 Jun 2009 09:22:00 +0000

This is my contribution this week;

There is too much information in my head, my head is completely full the images and emotions which flying like flies stinging like bees my mind is on a Catharine wheel that never reaches the sky. The sickness in my stomach reaches me, awake makes me flicker and tense.

Robyn's blog... Robyn in Madrid

noreply@blogger.com (National Autistic Society) — Mon, 01 Jun 2009 08:50:00 +0000

I have been walking around Madrid singing Up in the mountains there's a bear he dosn’t care, which is a song by Tim Ten Yen who played at the Pig Pen on bank holiday Monday I had a brilliant time, the next day I got a train boat and the following day another train and ended up in Madrid meeting a guy from the USA who has Asperger’s and has built a university society working to raise awareness around campus, I have had a really great holiday, but I have just noticed there is a breack in my cable casing on my iphone charger GRRRRRRRRRRR I have been to an art musem, scultupre graden market, park, gardens and lots of long walks, and nice food,and seen lots of music. This is a photograph of Madrids skyline.

Seeing in Two

noreply@blogger.com (National Autistic Society) — Tue, 26 May 2009 08:37:00 +0000

This week has been rather slow, I've also been seeing things in two’s this week I saw two Postmen and two pizza delivery bikes from the same company, also this week I went to Gabriel's birthday party, which is probably one of the best birthday party’s I have ever been too, I also helped run the Pigpen on Monday, I think that it is great to have such a night in london, I looking foward to going to Spain, so I will be blogging from Madrid next week.

This week I wanted to share some pictures with you

noreply@blogger.com (National Autistic Society) — Mon, 18 May 2009 07:41:00 +0000

I have 4 favorite paintings

1. This elephant, I like the elephant beacuse of the sky and the way the green sits in the picture , I went on to paint one of a Pink Elephant for my cousins daughter

2. AFLWAP This is a painting which came from a sketch in my notebook, all the kids I work with have an expression book, a book they can use in any way thy chose to expres themselves through art, poetry, etc sometimes Ill set specific tasks in a week

3. Portrait not meaning to be a self portrait but came out that way

4. Joint 4th is the fiery lion and fiery man

I dont find painting an effort in some ways, I have to let my mind free up and then let myself-elf paint, sometimes a painting an take along time other times it can come very quickly, sometimes my pictures make no sense, I have no idea what a psychologist would think of them, I can;t chose what ~I paint really, ideas will form in my head but be no specific until I reach the paper, like when I painted the fiery man I had to get execs energy out first on this 1 painting tighten I knew I would paint a face ad start with red then the rest came to me as I painted ok now orange now yellow etc, said an imagery voice in my head, then I mixed the colors with my fingers ( I don't use brushes) and sat and looked then added a bit more and now I am still waiting for his hair to dry, I have decided I would like to sell my paintings I have many perhaps 30 I want to buy more paint so I can be free er when Im painting (i.e not worrying I might run out of paint)

Off with the hair on with the HAT

noreply@blogger.com (National Autistic Society) — Mon, 11 May 2009 08:43:00 +0000

Hello,

Well this week I am going to have my hair cut off (well he blue parts I am going to give my hair a rest for 3 months and then have it done again just before I go to the USA (although I love having blue hair), so in the mean time I shall be wearing a hat . I have been practicing my cornet a lot, and have a lesson on Monday, I have been working very hard on work, and also my paintings, I am constantly in my painting jeans and T shirt, This week also marks a year since I moved to london .

Autism strategy

noreply@blogger.com (National Autistic Society) — Wed, 06 May 2009 19:48:00 +0000

Autism strategy, here's a buzz word which you may of heard recently the government is now as of the 29th April consulting people involved with autism whether you have autism, or are a family member, or professional, the government is asking for people's views, in the form of a PDF on their website, why is this so important? Because finally the government is learning that We exist (meaning people with autism not just me). This means that proper services and considerations in creating services will be made for people on the spectrum, I can't urge you enough to participate, please go to the link here to take part;

www.autism.org.uk/dhstrategy
---------------------------------------------------------------------------------------------------------
This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing companysecretary@nas.org.uk
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG. www.autism.org.uk

Easy Listening

noreply@blogger.com (National Autistic Society) — Tue, 28 Apr 2009 09:32:00 +0000

Sometimes its very important ti have someone to talk to, you might think
people with Asperger's wouldn't benefit fro this-since a lot of
information we use to convey information to others and understand others
is non verbal and very often this is something people with Asperger's
only have limited understanding of but also sometimes understanding how
others feel and others opinions can be difficult.

Not everyone is the same of course and there are many people with
Asperegr's who have good non verbal and empathetic skills

actually people really do want to talk , a que of people on the spectrum
formed at the end of my talk at UCLA. Its been suggested that there is
a need for someone with Asperger's to counsel others ( people with
Asperger's have the same types of experiences that would mean they would
want to seek a counselors help as Neurotypical people, but the support
of the counselor needs to be geared to supporting someone with
Asperger's) One important use for talking is it enables people to gain
confidence, often you will know you need to make a deascion and have
some idea of the answer but need someone to second that you know what
your doing you don't need people making descions sometime different
options can be confusing when we verbalize thoughts though it can help
us to organize our thoughts and then we can process our ideas, this
isn't true of everybody this week at the first day of my course we were
split into groups of 3 one person talked on a subject of there choice
for 3 minutes to begin with both the other members of the group listened
after 1 minute one person stop'd and after another minute the last
person in the group stopped listening to the person talking was talking
to themselves,the effect this had was some people were self conscious
some couldn't stop listening some people find it easy and this task
shows how important it is to get feedback sometimes it difficult to
communicate with people on the spectrum because we don't get the same
feedback as we would someone who is neurotypical, this dosnt mean its
not worth while though.
---------------------------------------------------------------------------------------------------------
This message is from The National Autistic Society (NAS). The NAS randomly monitors the content of e-mail messages sent and received.
Any opinions contained in this message are those of the author and are not given or endorsed by the NAS unless the author is clearly stated to have authority to bind the charity, and this has been duly verified by e-mailing companysecretary@nas.org.uk
The NAS is a company limited by guarantee (No. 1205298) registered in England and also a charity registered in England and Wales (CR269425) and in Scotland (SC039427), its registered office being 393 City Road, London, EC1V 1NG. www.autism.org.uk

AHHHRRR Bank holidays at least their not tube holidays!

noreply@blogger.com (National Autistic Society) — Tue, 14 Apr 2009 08:31:00 +0000

This week I visited my parents in suffolk, and I didn't go anywhere I sat in my old study and wrote music, I wrote 2 pieces one is 15 minutes one is 5 , Ive been messing around sampling things and basing music around it, which has been the most creative ive bene in a log while Somtimes its a bit odd visiting my parents because I lived there for such a long time maybe 8 years and I lived away for 5 years now, 5 years after having moved here Id of just been starting college, and it seems like the time lapse is shorter since I like being in control of my life anyway I hope your all having a good easter.

Interview with NAS Blogger- Robyn

noreply@blogger.com (National Autistic Society) — Tue, 07 Apr 2009 15:32:00 +0000

Q. How are you today?

A. I am very happy today! My bean bag and my Iphone are also joining me today

Q. You're an Aspergers Trainer? What have you been doing recently?

A.I travel the country to talk to people and teach them about Asperger syndrome. Last week I was in Norwich, Nottingham and Kettering. I am also currently working on a research project for my old college based in Norwich. I'm looking into different services for adults with autism in the area and this will culminate in a handbook for students with autism and Asperger syndrome who are leaving home.

Q. That sounds interesting. Did you enjoy being at college?

A. Yes very much, I got kicked out of school at the end of year 10 (a year before the final year of high school), mainly because of a lack of support. Because I was really badly bullied all day long and my teachers didn't understand me. I just used to walk out of lessons. At college they provided me with good individualized support, they learnt about me and how Aspergers affects me as everyone is different. I learnt to deal with bullying, rather then feeling like I had the plague and nobody wanted to be around me, it felt like I had a new pair of eyes and people wanted to know what I saw. I joined the college council and later the disability forum. They asked me to tell their staff about Aspergers, which eventually led me into my training job. After college I worked for a large computer company in Manchester. I didn't really get on well with it, again because of a lack of support, so I quit and decided to ring a few colleges and see if I could run some training sessions. So from 15 minutes of a training session, I went to running 3 hour training sessions alone. Later at university I applied to mentor young people with autism through a mentoring scheme and now I do that freelance in London.

Q. Why do you think having a mentor helps children with autism?

Well I work specifically with children with Aspergers, they are generally in mainstream school or do not have the right support in terms of social skills so they spend a lot of their time confused and often bullied. Whilst I don't claim to be a neurotypical (someone who doesn't have autism) and thus I don't know everything, I do help them to decode situations they don't understand. There are techniques that can help children with autism to understand their emotions and what has happened in a certain situation. I use timelines to retrace what happened and to break incidents down into steps. I also use number scales going from 1-10, so they can pick a number to say how good or bad they feel about something. These techniques often make more sense to them then just explaining the situation.

Q. Have you been bullied as an adult?

Yes I got bullied up until the age of 20, I got bullied by a woman I lived with in a student hall, she would come banging on my door and yell at me and I don't know why. It got so bad that I became quite agoraphobic. I also struggled at work, I think I was a target for the managers. I did well until they started putting pressure on me to meet targets. I was already working a 22 hour week on a 16 hour contract, when my Cerebral Palsy started to give me problems. They didn't accommodate my needs either, this made me very unhappy. Often people with Aspergers have emotions which are extreme compared to others but my brain is made differently. This isn't an excuse for bad behaviour but an explanation. Actually extreme emotions can be a good thing if you learn how to manage them as they can make you very creative. The reason I don't like pressure is because I put so much pressure on myself.

Q. World Autism Awareness Day (WAAD) is really important to help increase understanding of the condition. What do you want to tell people on WAAD?

A. Talk to someone with autism and ask them what it's like! Don't judge people until you really know them.

Q. I'd like to thank you for doing some wonderful videos showing how you are 'standing up for autism' on WAAD (link through to video). In one of your clips you interview your bean bag, which helps you manage your anxiety in difficult situations. What other sorts of things help you and why?

A. My IPhone is really useful. It has maps so I never get lost. I like maps, if I am anxious about a new place, using a map I can see what's coming next as it has a satellite view. I use the IPOD to listen to music, its familiarity is comforting to me. My favourite albums are Dark side of the Moon and the Wall by Pink Floyd. I have also been listening to a band called cLOUDDEAD recently. I like Iggy pop and the stooges (and Iggy solo). I like Radiohead and many more. Being able to phone and text when I need to is also great for advice. I receive informal support from Bill, an Aspergers life coach, whom I live with so I can call him if I need to.

Q. What kind of support do you receive from your local authority Robyn?

A. I'm not eligible for anything from them at the moment. I'm really worried as Bill is going on holiday for a couple of weeks soon so I won't really have any support, but I do go to a National Autistic Society social group for adults with autism which helps. I don't like being on my own.

Q. It will be difficult for you while Bill is away. Are you going to put any practical strategies in place to help you cope?

Bill and I have made a 'what to do' list and listed all the possible bad feelings that might occur and what to do if they happen. This will really help me because when I get anxious, I can't think. It’s like my brain is full of tube lines like maybe 5 of them that go in both directions and when I get stressed they close down to one lane and data is passed one bit at a time so it gets all out of order and I get confused. People rush me and presume that I am stupid, however I can be very articulate and thus I am often perceived to not need support. This is because I can explain my needs but not cater for them all the time - particularly when I become stressed.

Q. What do you think you will be doing in the future?

I hope to learn to live independently. In the past when I've lived alone I have become ill with bronchitis and not eaten properly. I was also lonely, isolated and depressed. Bill is teaching me some life skills and I'm learning to make sandwiches -if Bill makes me sandwiches in a triangle I walk round in a square - it's an autism thing!!