Autism Awareness

April is Autism Awareness month and this week is Autism Awareness week.

I have autism. I have known since the age of 13 I was nearly 14.

It’s a spectrum I am known as high functioning by professionals . I can do a lot for myself such as cook all my meals, clean, write, read, speak to people, load clothes in the washing machine and put them into the tumble drier , tidy up, make my bed, pay bills monthly, socialise with family and friends in small groups.

I am also creative I paint, draw, deco patch, create stickers, use pro create, create stickers on cricut, diamond painting, painting by numbers, embroidery, and quick at learning new things on technology. I enjoy reading books and writing stories. I am a quick reader as I am told by a lot of people such as my friend.

I have support needs due to my mental health not my autism. I have care 24 hours a day by support workers to keep me safe 7 days a week.

It’s to do with my moods they are unpredictable and my self harm. If I had the chance when I feel depressed or low in mood I would cut myself with sharp items and I probably would do some serious damage to myself and probably not think straight and attempt to do other things.

What I find difficult is;

Loud noise/unexpected noises, crowded places, using eye contact with people I don’t know mostly, new situations, changes even planned ones like holidays, anything to do with maths, making conversations with people I don’t know well, some one unexpected touching me, phobias such as sick, long complicated words I don’t know the meaning of, my routines being broken, not being able to say how i feel sometimes , speaking on the phone to unknown people or unexpected phone calls, emotions building up.

Meltdowns happen with those with autism even adults. It happens with me occasionally now when emotions, feelings build up when I cannot express how I feel, or a change is coming up or after being to a crowded place. It sometimes results in self harm.

I have sensory issues I was diagnosed with sensory processing disorder a few years ago. It’s to do with auditory and touch. I dislike it a lot and causes anxiety.

I have had so many special interests over the years such as;

TY Beanie babies when I was a child I collected around 100 original TY beanie babies by going to fairs and shops to buy them.

The story of Tracey beaker I was quite old when I stopped watching the programme. ‘The SIMS computer game I would spend hours on it. social media such as MySpace and bebo.

Tamagotchis

Furby

the wizard of oz video/DVD

Disney movies

Skoobies

Jacqueline wilson books would always be wanting one..

Harry Potter books

Gameboy/Nintendo DS ~ loved games such as Super Mario.

Now these are my special interests;

Art/crafts/anything creative

Computers and technology such as iPhone/iPad...etc

Musicals on television and at the theatre.

I get obsessed over things easily such as subjects , items, phobias, thoughts, the past.....etc

it’s all I can think abo

I once was thought I had an eating disorder because I had an obsession over calories after I put on some weight due to an anti depressant i was taking so I starved myself. It turned out to be an obsession which the eating disorder psychiatrist thought it was. I was very underweight.

Autism is a big part of me I even have the autism puzzle piece on a butterfly on my foot. It shows autism is a big spectrum.

Those with autism is different in how they are, what they like, what difficulties they have. They may have the same difficulties I’m the diagnostic area but its The way they react is the difference.

AUTISM AWARENESS 💕

Struggling at mainstream school

School can be a struggle for any child especially in secondary school but for most of my education in school I never had Autism spectrum diagnosis/Dyspraxia/mental health. I was not diagnosed until I was 13 a couple of months off 14 in December 2003. I struggled physically and mentally. The way I was treated in school has affected me for many years and parts of how I was treated has an affect on me all of these years later.

I started school at 4 in September 1994. I was not understood from the start by teachers especially. My speech was not good at 4. I had speech but only said the end of words I am told (I was having speech therapy). I never went to nursery I hated it that much I never went back, so I struggled when it came to starting school. I did not like my Mom and Dad leaving me I would be in a state after my Mom left me in the classroom for a good while. I had a lovely teacher Mrs Boots in reception who settled me, but it took time.

I liked primary school. I struggled academically especially in subjects such as Maths, Music, Drama and PE. I have always struggled with numbers. I just cannot get my head around Maths. I enjoyed English and Art and that is still the case today. I enjoy reading books still and Art. I hated performing, acting, group work. I would be happy doing things alone.

I was shy very shy, very quiet, never challenging during school hours. I think thats why I was never diagnosed with any problems for many years. I struggled to ask for help in lessons or ask for help when I struggled terribly. I had no confidence and it only got worse as years went by. I hated school Christmas shows and class assemblies I disliked speaking in front of a crowd.

I made a few friends during infant school who stayed my friends all through primary school. I had a best friend who was my friend until year 8 at secondary school.

I enjoyed infant school, junior school got challenging at times especially when a new girl came into my class in year 3 and within a few months began to pick on me, laughing, whispering and threatening me to do things I did not want to do, and then by year 5 another girl teamed up with her. It was all stopped when my Mom got to speak to her and her Mom got involved and then the class teacher. She ended up in the same secondary school and never spoke to me even then!!

I had a maths tutor at home Mrs Lowe on a Saturday afternoon who really, incredibly got me to learn basics of maths such as the time, addition, times tables and much more. I didn't know any of those things before Mrs Lowe came. I never got my Year 6 Maths SATS but at least I knew some Maths.

My primary school was friendly. I attempted to stay on a 2 day overnight trip to Kingswood in Year 5 I didn't want to go I was frightened to go I hated staying away from home but I went and it was a big achievement but I never really enjoyed it. I always attended school trips and school discos and other events even if I struggled. I always tried my best even if I guessed.

I didn't want primary school to end but like all things it came to an end and i had to go onto secondary school and I was right to be afraid. It was a horrible experience the whole 5 years I was there.

Secondary school was a huge thing for me. I started in September 2001. I hated it from day 1. I did not like how big the school was, the noise, the change and new students in the same form/year who were not friendly. I started to show weakness to males in my form/year by the end of the first month and began to get called names.

I was getting quieter and less confidence than ever with signs of anxiety and depression in year 8. At home i basically was a different person I was angry a lot and aimed my anger and frustration at my family which wasn't fair.

I began to skip school thats when I was taken to my doctor and she referred me to see a psychiatrist at The Priory in Edgbaston. I was diagnosed with Autism spectrum disorder and dyspraxia both mildly. My doctor at the doctor surgery always said i wasn't suffering from anxiety/depression but I think even at 13, I was.

My parents had a meeting in January 2004 with my head of year (year 8) and special educational needs co-ordinator. In year 8 I had to see educational psychology, occupational therapy, speech therapy and then i got a statement so I could get a learning support assistant in some subjects, not all.

My statement I had for about a year and a half in school until i left at 16 but carried on in college my statement. I struggled still the bullies continued and it got bad at times. I continued to not attend school some days.I began to not eat at school at all. I felt nervous, anxious, isolated and depressed. I had help by a lovely lady who was my learning support assistant. I got help in Maths, Science, Geography and Youth Award, I also was able to not do PE in the last year I got to do art coursework instead, and I got to go into study centre at lunch. I wasn't coping being on my own at lunch and the bullying continued during lunch for an hour. I wasn't allowed at morning break which caused me a lot of stress and anxiety being in noisy crowds on my own.

I had not any friends really by the time I was 15. My friends I had made new friends new groups of friends we had all fallen out over a specific thing which seems small now but it was huge at the time. It may have looked to outsiders I had friends but they were just people in my year who helped me at times.

By time year 11 came I was ready to leave I had enough of school it was never ending the emotions and the bullying. When some knew i had extra help and when my ex best friend told some i was diagnosed with autism. I was called spastic, retarded, freak, ugly....etc. I had a chair thrown at me a few times, pushed, shoved and a couple of times being trapped from getting off the bus which scared me. I had to catch the bus as my younger brother finished primary school at the same time so my Mom had to pick him up.

I failed exams, and coursework. I felt I had no future being autistic. I felt so many thoughts and wanted to end my life a lot of the time. I used to break things at home through anger at school. I had many meltdowns every day after I got home, sometimes it went on for hours.

I left school at 16 in the summer of 2006 and went onto a special college on in Harborne - Birmingham in September 2006, college was so much better for a while for 2 years and then in my 3rd and 4th year things with mental health deteriorated quickly. I felt accepted and had friends and I am still friends with a few of the friends I had at college now 11 years later since I left (I left in July 2010). Every student there had a disability such as Autism/Aspergers, blindness/partially sighted........etc.

I do in some ways think going to special school would off helped but it might not off as I find it hard to adjust to change. I find it difficult to accept changes know matter how much time is given to me to adjust to the change.

COVID-19 Diary

My name is Lucy, and I am 30 nearly 31. I was born on 17th February 1990. I have Autism, a mild learning disability, sensory integration disorder and Bipolar disorder. I went to mainstream primary school and then mainstream secondary school in Sutton Coldfield where I struggled and then went onto a special college in Harborne Birmingham for 4 years where I studied BTEC Art and Design. I had some mental health difficulties for several years and went into hospital for 18 months. I currently live-in supported living within a flat in Chelmsley Wood which I private rent. I have improved a lot in the last few years since living in my flat whereas before I shared with clients.

04th February 2021.

I got an email and text message today saying my COVID-19 test has come back positive.

I went for a test because my chest was crackling and I was coughing quite a bit, and I thought it was a chest infection, but my care provider wanted me to take a covid test to be sure it wasn’t covid-19 and the doctor who I spoke too yesterday also wanted me to take a test. I also had a bad headache i've never had such a painful headache which lasted 48 hours. I was very shocked and quite anxious once I found the result out. I never expected it to be covid also I felt that covid is now very real. I think the doctor who I spoke to yesterday had her suspicions it was covid as she told me all the rules about covid and didn’t mention having antibiotics at all.

I am very worried about the 10-day isolation it has been a long time since staying in for more than a few days without having freedom to go outside. I think I will struggle to keep busy. I am going to take one day at a time and do a weekly planner. I currently feel well in myself which is strange as I have covid.

I am scared that I am going to be very unwell with it, but my Mom, Dad and support worker has said I probably won’t because I am in my thirties and have no health conditions the only reason, I may be unwell that I think is because I am overweight.

05th February 2021

I have slept better last night I got a few more hours sleep and wasn’t awake all-night coughing. I have felt very tired today still though I keep falling asleep!

I haven’t done much except watch daytime television such as This Morning and Loose Women and go on my Nintendo switch to play animal crossing: new horizons (the best game ever on Nintendo) but I haven’t felt negative or felt unwell.

I can’t get motivated though to do anything creative but there’s always tomorrow.

I spoke to Mom and Dad on the phone today. I have also told some close friends I have got a positive covid result and that I have very mild symptoms. I have had a bag of chocolates including my all-time favourite squashies and crisps come off my project manager at my care provider which was lovely.

I am planning out my week hour by hour until 20.30 and hope to stick to it from tomorrow.

I hate all the change covid has bought on such as staff having to eat in a different room to me and them having to have breaks away from me and the aprons, arm covers and gloves they have got to wear. I know it’s to keep them safe but I hate the change I am experiencing.

I found out two staff that worked with me when I had a headache have also got covid!! I feel bad I passed it on to them.

06th February 2021

Today I woke up feeling refreshed. I am feeling well I feel better than I do if I had a head cold or sickness. I am feeling very tired though I feel exhausted I keep falling asleep. I got up to a text off my friend asking how I am which is lovely, people do think and care about me I’m realising.

I haven’t done much again just read a book on my iPad on iBook’s app and watched one episode of the great pottery throwdown. I am planning on doing more activities tomorrow. It is a pain I need to exercise for my leg and back pain but weary of exercising incase I make myself unwell because of covid. Taking a deep breath in hurts less today which must be a good thing.

I am keeping myself settled and well in my head so that’s a positive my diet hasn’t been that good due to covid isolation but there’s plenty of time to concentrate on that after isolation. I do feel the boredom is setting in.

07th February 2021

I woke up feeling a lot better I had hardly coughed throughout the night and slept better.

I had tried to keep busier today on my Nintendo Switch on animal crossing, diamond painting/art and a bit of reading and I spoke to Mom and Dad on Facetime and also Max, Emma and Oscar too later on in the evening which I loved doing.

Dad also bought me a pizza over on the evening for me and my support workers a Hawaiian pizza our favourite which I enjoyed, so it was a happy day.

Emma and Max passed my birthday present onto my Dad to give to me so I can keep busy throughout the week as I have got quite a while left isolating. It’s my birthday on the 17th of this month. Emma and Max bought me a Nintendo game Tetris, diamond painting kit, and some earrings Emma made. I love all the presents they sent me.

I finished watching the great pottery throwdown and also watched dancing on ice which I really enjoy, shame a lot of the contestants are going out due to positive covid tests and injuries.

I spoke to Luke my good friend today he is well and missing me. I haven’t seen Luke for one year. Luke lives in Swindon I met him 10 years ago when I was suffering from bad mental health.

08th February 2021

Today I felt more alert. I have coughed a bit more than usual since I got the virus.

I did a Van Gogh style painting which was okay I suppose not the best painting I’ve done it was my first go at it though and tried to make an air-dry clay model which didn’t work out very well.

I also played on my Nintendo Switch, watched Netflix, read part of a book and spoke to my friend. It was a more active day than the other days.

I started to eat healthier again I thought I cannot go back to how heavy I was after Christmas and new year. I haven’t done much eating healthy since I got covid.

09th February 2021

I have felt quite tired today again I think that will carry on for a while. I haven’t done many activities again today. I have felt low in mood I think it’s because I’m not moving much and I’m not doing anything but times going quite fast.

I have watched daytime television such as This Morning and Loose Women and Lingo, I have played a lot of animal crossing game on my Nintendo Switch, read and done a bit of exercise on a game called fitness boxing 2 on my Nintendo switch connected to the television

.

I have started doing the newsletter for the care provider I am under for this month which I’ve been doing for several years. I spoke to mom too.

My diet has been generally healthy today and yesterday I did weight myself yesterday and I have gained 1lb but hopefully that will be off by this Sunday when my proper weigh day is – I always check on a Wednesday to make sure I’m not going in the wrong direction.

10th February 2021

I kept busy at times today. I felt bored a lot the boredom is getting quite hard but glad I’m not going outside in a way as its freezing out there I’ve been told the temperature is very low. I can feel it cos the window has to be a bit open it can get cold in my flat at the moment I can’t wait till covid and the isolation is over for me because of the coldness too.

I played on my Nintendo Switch on animal crossing and carried on with the newsletter for my care provider.

My cough feels worse at times but it’s not affecting me just a tickle every so often. My support staff have COVID-19 tests on Thursday (tomorrow). They get tested weekly and get the results within 48 hours.

I spoke to Luke for a little bit on the phone. Miss him lots he’s my true friend.

Looking forward to my birthday next week even though it’s going to be different due to national lockdown restrictions.

I have done a lot of reading today finished my 6th book of the year.

My community nurse Fraya emailed me seeing how I am and to get an update on how things are going. I mentioned I have covid she was quite worried but glad I don’t have it bad once I told her I have just a cough and its very mild compared to people I’ve heard on television that are in hospital on machines.

I do watch the news on ITV a bit too much at the moment because of covid and it does stress me out sometimes and then my support staff suggest changing the channel.

11th February 2021

I kept busy and wake all day. I did some clay modelling with air dry clay I tried to do a Pikachu from Pokémon which turned out dreadful, so I threw it in the bin. I also played on my Nintendo Switch and read a lot of Vinnie Jones book about his wife Tanya which I finished. It was a sad book.

I spoke to Luke my friend for 10 minutes on the phone. He is sending me a birthday card and present which should arrive tomorrow.

I spoke to Mom too she had a cough but she’s feeling much better now. I am looking forward to seeing my family on Sunday all day I missed seeing them last Sunday due to COVID.

I am happy that I will be out of isolating from Saturday night. Yay! I get to go out Sunday morning.

12th February 2021

I felt tired this morning I think it’s due to lack of sleep due to leg pain and back pain not COVID this time.

My support staffs covid-19 results have come back negative so pleased. I’m not spreading it around everyone - anymore.

I am looking forward to getting back to normality day to day life.

I will look forward to having freedom to leave my flat.

Weigh day is Sunday hope I have lost even though haven’t been active a lot this week.

I spoke to two friends today I am grateful to have such good friends I may not have many but the friends I have are amazing.

13th February 2021

Today I had my fourth track and trace phone call checking up on me and making sure I have no new symptoms I was told the cough could last months. It’s good that they are so good at phoning people with positive Covid results.

I feel it’s a relief that isolation is finishing tonight at 23.59 and can go out tomorrow. It hasn’t been long, but I feel a bit trapped staying in for so long without not being able to go for a walk at least. It has been boring at times but I can say it’s gone very quick thank goodness if I went slow I don’t know what I would off done.

I finished watching a Netflix series and played on my Nintendo switch on animal crossing started a new book and tided up a lot today in my bedroom.

I also did a food shopping list ready for Monday when I can go out and do my own food shopping, I had to have it delivered last weekend.

Hope you have enjoyed reading my Covid-19 diary!!

Lucy x