Hello my fellow autistic people, sorry I’ve not blogged . I’ve been keeping myself and my brain busy . Even though it’s still processing everything.
From routine change to food shortages and not getting the food I need. To doing my fitness from home. I’ve joined ticktok, and started making silly videos along with other bits. Things you do when your in quarantine aye. I even brought puppets.
Working out from home is a not so much a of a change because I did it to start with. It’s not having the gym to go to. Just waking up at stupid o clock and going to the gym for an hour. I miss the machines I really do. But I’m improvising as I go along.
Also I have my mothers dog to take out twice a day to do cardio. All is not lost. Just taking each day as it comes.
Hello all ,sorry I’ve not posted.. if your on the spectrum than you know are brain is slowing taking in the events of the coronavirus and how everything is up in the air.
Literally everything is cancelled, the world has gone mad , people are panic buying and being greedy cunts. Shelves are empty.
Reading on the NAS page well its bare minimum to how can we cope well if your an adult like me with no support its merely get the fuck on with it. I’m sorry but I can’t change it. All we can do is stick together in our spectrum community . I’m living on the food that I’ve got in the freezer and fridge and cupboard I don’t how long this going to go on for .
I can only make light of the situation. And by doing that I brought puppets. Yes weird way of doing things but fuck it. Say if my gym shuts due to this virus I need something to keep my brain going . If I can entertain the numbers of people at home in isolation I will. Yeah me and creativity .
I don’t know what to suggest to my fellow people on the spectrum because we are all different and I don’t how you would deal with it . Just keep your mind busy. Are food plans are fucked up due to people bulk buying are routine is going to be messed up. And it’s going to be chaos.
I just want you all to know your not alone in this situation. Catch up on Netflix or have a DVD marathon or a read book. Times are hard and the whole world is struggling.
We get though this and come out the other end. Love you all my fellow people on the spectrum 🖤
Hello all , sorry I’ve not been blogging much, having selective mutism I tend not to speak say much that means on all platforms of real life and on social media. Or my obsession takes over ie my fitness life.
Currently in a diet and a new workout, I’m boxing 3x a week now and doing more core training ( not trying to get a six pack lol ) just want to lose belly fat and doing boxing will help. And doing weights inbetween helps too.
Oh news about the adult social services I’ve had another email to my reply. Of the evidence I sent of of them breaching data she has passed it to finance team.
Also I’m keeping quiet about the ombudsman investigating. As I still have 9 days left for an officer to allocate someone to take on my case.
When they do they will phone me. Prob ask for more details also happy to provide them the data breach the did. I’m still waiting for a reply from my mp ( well the assistant ) so at the moment I don’t know anything right now it’s all one big question mark.
So right now while all thats happening and the waiting I’m just putting my brain into fitness and just keeping myself to myself. If weather gets better I tend to walk more but weather is up and down and I don’t fancy walking 5 miles to get rained on lol.
If you have any questions on anything feel free to ask.
Or if If you want me to bring up any blog topics let me know .
I’ve had this question a lot and put in front of me. To be honest, like every other advocate I’m not medically trained nor do I hold a PhD in this and that. I think being an advocate is from your only personal experience and talking with fellow people whom are on the spectrum . Thus being a spectrum everyone is different some are diagnosed as a kid some late in life as an adult.
I don’t mind giving the odd a advice if I can but I can’t tell if i feel that you have autism or be somewhere on that spectrum . I was diagnosed as an adult at 31. I’ve only been on my own self discovery 3 years. I’m still learning and evolving about myself.
Everyone can have a opinion and is entitled to one. This is the world of social media. You will get anti vax people..you will get people that won’t understand autism. And they will be people saying ooo we a little bit autistic and yes that offends us and upsets us. A lot lot. You have people wanting cures as well. And people saying this food causes his/her autism
Also I read a lot of online stuff and it’s a mix bag. From Facebook to Twitter. To the other shizzle. Like yesterday super nanny jo frost. Whom said do you think parents are pushing for an adhd diagnosis too much. There was mix opinion from autism / adhd parents to a few adults with adhd. To the odd person saying there only pushing for it to get more money etc all that bullshit.
Yes you can have a naughty child. But ones a tantrum the other is a meltdown ..what’s the difference you ask. Well a tantrum is not getting what you want and you causes a scene. A meltdown be that child / adult it’s the environment setting ie too much noise, lights, people, background noise and lot else going on and a lot for child to process it all. Like if you see kids / adults with ear defenders it’s to block out that noise. Like myself I wear headphones and have emo/rock music up full blast, wearing sunglasses at all times .bright lights. . Theres more to sensory’s but like i say every spectrum is different. One could not be bothered by a little noise the other could.
Like girls and boys . Boys are easily diagnosed . Girls are harder due to this masking we do. I never understood why I never got diagnosed as a child. Like i say maybe I masked so well I went off the radar. Had it changed me now as person getting that diagnosis at 31. No I’m still me . Autism is a part of me and don’t define me. its answered a lot of questions to my childhood and adult life. the reason for not coping when I moved here in 2011 even before than and living up north in harrogate to living by the beach within that timeline taking 9 overdoses . Self harming. was that my brain telling me I was different I never know.
It’s like the high / low labels . Which need to go . Like the ex support worker I had was your high functioning . You do more that most with autism. Thats not what I want to hear. Just because she saw me twice a week she thinks she knows my life . No be with me everyday. Just because I’ve gone on holiday and done 8 counties. No I went with somebody but I left that part out why because I can. Yes the last few places I went on my own . But it’s down to planning and google maps and time etc and booking things months in advance. Why do people thing I can get on a plane and fuck off and walk out my door . I can’t . I can only walk out my own door due to routine like shops I know the gym. You know places my brain knows . Bus routes. If I go on the train on a random kerri moment its because I know the sodding route. Like london I know where some of the museums are due to visit 20 odd times. And even the art galleries. Much as I liked to walk out the door and do the unknown I can’t. Even going to Glasgow gave me panics . Yeah I have my best friend there. And rabbit I met. But if they had not been there I would never go. Yes I do modeling I started in 2017 and it was great to be signed and published but you don’t know the other sides to that struggle. Reasons why I’m giving it up. It’s too demanding and it’s too much for me to take on. What got me though modelling ( masking) I’ve even missed photos shoots , lied my way out of it. Or not answered my phone . Its taken its toll on me and I realised this last year. So in June I’m moving away from it for my health . Plus with the council not helping me with basic support its been an ongoing battle for 3 years. The fact they think I have £78 a week i bloody wish. Or the fact they won’t even give me basic help I’m entitled to by law. But I have an mp on my side who’s been with me since day one. I’ve got the local ombudsman on my side investigating them too.
There could of been many times I could of gone fuck this and gave up but something kept me going and I don’t know what. Wish I knew.
Like I say me being a advocate. I can only tell you from my experience . Unless you feel your child really needs that diagnosis of autism/ adhd than go forward with it . But it’s not easy and doctors will refuse some..but they have to give a reasonable explanation of why. It’s a long waiting list depending on area of course and country. I was on a waiting list for 1 year. I’ve seen parents and adults wait longer. If you have money go private cost varied. From 2grand to 3 grand upwards. It’s long its lengthy. Your not going to get an answer overnight and your on a list and you can ever go up or be at the bottom it’s down to funding and waiting. I don’t know how it works with schools . I have no idea I don’t have children. But if your an adult like me and you feel your on the spectrum see your gp. Also pending on you need and what you have you maybe entitled to a service. Comes down to area though. Or they maybe lack of service.
Stating back to jo frost input about pushing for a diagnosis. I can’t comment. Not having children I can’t say. The page did explode in a way but jo frost is opinionated and will say it. She don’t even have kids either. maybe she put it up to see what reaction and what everyone would put . She certainly got that.
personally I don’t wish to be advocate I’ve got to much going on myself and still learning about little old me. the reason I wrote this blog in the first place was too give people in my situation or similar a voice. We all want to be heard m sometimes screaming at the top of your lungs don’t help or no one is listening. If reading my blog helps you or helps you understand you than I’m happy. If you want to leave comments on this blog feel free. If I can help answer a question i will but I’m not really going to give advice I don’t understand myself I can only point in you in the right direction.
My blog is for my daily life of living with autism, being told oh your very independent . Well I’ve had no choice to put it bluntly. I never moved into my flat in 2011 till I was 24 . I was misdiagnosed as bpd. I’ve had to cope . I could not go fuck let’s give up at the first hurdle . Just because I can manage a flat and other things don’t mean I do dandy and fine and rainbows. I struggle so much that there have been many occasions where I just wanted to kill myself. Just because I can pay some bill every month and feed myself and cats . What that makes me ok does it. Not saying people on the spectrum cannot be independent they can . But I’ve had to go though PTSD,misdiagnosis to self harm . To partner abuse who rip me shreds bit by bit and controlled me and who forced me to pick up there drugs . To a lot of other things. how did I pick me up again. I found the gym. And that’s the best thing ever. Keeping me alive is the gym. I struggle with social situations also I’m very isolated and I’m very lonely. I used to go out drinking and clubbing just to mask but I felt even worse because I go ignored or people would say they meet me and not. When you have a past childhood like mine its gutting call me senstive but it is . People used to make friends with me. Only to take the piss . I got bullied because I never had a mum in my life she up and abandon me and my brothers. I was 8 . 3 weeks prior to that I was sexually abused found out it been going on from the age of six. He was our baby sitter and mums friend. How did I cope I went off the rails Because it was not handle well. Not ovbs my dad . He done well by me. But its was the social services the cps . He got away with it . My childhood was never the same hense fourth PTSD. I went to 5 different schools . I left my secondary school in year 8 just as I was going into it. My mother was barely in my life she would meet us at London euston and there be days where she would stand us up . Thank god for nanny wales she would look after to us because she lived in London. But when we did get to see mum. We be palmed on to everyone else including her mum ie my other nan. Or she have end of week before we was fucking off home. I told my mother I will never forgive for for leaving us even at that time in my life when you need a mum. We get on ok now but it’s not perfect and it’s not the same. Its more like a friendship ish than anything else. My dad . He went back to Ireland where his sister was living. Than he moved to USA and got married. We alright and get on fine but I undertand he has his own life and thats cool.
As for trusting people and being near people I keep my circle small . I even read psychologist books and body language books even though most folk on the spectrum can’t read body language I can because I’ve taught myself. So I can watch everyones move it’s my PTSD I like to be aware of whom I’m interacting with for my own safety you can blame my ex for that. I never saw the signs and I fell into a trap. And was there for 2 years. I prefer not go out anymore either not even down the pub . I can’t deal handle with people anymore. I rather stay in . Least I’m safe. Yes I get invited to the pub by my dj friend but I’m not down for that life anymore plus masking is exhausting.
I avoid very well. People have to come to me now . Yeah I meet one of close friends for a coffee and the other normally comes to me. But if people want my friendship than they know where I am. Is it healthy staying this isolated and locked of from society. no But I don’t know anything else . When I had that support worker I tried the group but it got too much. Also I still felt left out. Some were young living at home with mummy and daddy . Some where at uni . And some had jobs and theres me not a hope in hell . I’ve worked I’ve studied but I never coped with both I passed 3 course but I was that person who did everything at college alone or hid in the library. I used to drink on my own. I still do everything alone. Fuck it.
To be honest I don’t what my future holds for me I have no idea. I like to be bright one for sure. But I’m still in this mess 3 years later. Nothing is happening I’m getting worse as the days go by. I put on a farce and it works. The gym my blog my cats my niece and nephew are keeping me from sinking like the titanic.
Anyway … I’m off and thanks for reading. It’s a long one today. My blog is open to anyone and I mean anyone . Feel free to comment.. 👋
Well more good news has arrived in am email this morning, the local ombudsman is taking on my case, which is great, I’ve just got to sit and wait for them to investigate my case , I’m so happy they have taken it on . Considering I’ve been waiting nearly 3 years for help.
Also much mp his been in the battle with me since 2017 , this all should of happened when I got my diagnosis of asperger’s ( asd ) I’m hoping that my battle will be over soon and I get the right support and basic help. I’m not going to get my Hope’s up . But I’ve got two authorities that are helping me.. has my complaining , constant back and fourth strength of not giving up and just kept fighting for a right that clearly states in the equality act that I am entitled to.
Perseverance is key . It has and I emphasise on this it’s been stressful , emotional and I’ve had times where I wanted to throw in the towel and give up. I’ve cried, I’ve hit blocks , I’ve been so stressed that I wanted to rip out my hair.
I don’t know where I find my strength , I don’t.. its 3 years a long time. Yes it is. I can’t say that it’s not been stressful because It has. Anyway I will update you when I know more..fingers crossed aye. I get what I need.
how to start this one .. quite plain and simple, because autism its not visible . Small percentage of people will think your dandy and this and that.
I can clearly tell you it’s not, what because I have tattoos as well I’ve been told I’m fine no really ( you think I’m joking) , tattoos is how I express myself, its like art galleries with the weird and wonderful . I’m that but a walking one , some are so quick to judge.
Here are some I get on the daily…
1. Your tattoos 2. I go to the gym ( 6:30 at stupid o clock 3. You travel ( that takes planning not oh let’s walk out the door . I can’t do that) 4. You can cook and clean. 5. You have social media you doing fine) there just some of the bs I get.
I give you an insight into my life as an adult living with autism and what effects me . So if its half term or school holidays I avoid going out . Only if I go to the gym or shop. I don’t like being served by younger people ( i don’t know some say its my PTSD being bullied all though school / college/ work. I have to go out with my headphones, I avoid conversation I just want to do what I have to do to enter that outside world and get on with it . I know when school kids are about the times I clocked routine so day to day between 7:30 they go to school ( some go around 6:50 ) they finished between 3:00 and 4:00 times I avoid. I get up 3x a week and go to the gym around 5:40 alarm goes off I leave here by 6:05 . Mondays , Wednesday , fridays. I get out the gym between 7:30 , 7:50
I don’t like small talk I make an excuse so I can quickly rush off . I’m not very good at soical ques I tend to misread or misunderstand or I get told I have an aggressive tone ( I don’t know, I blunt as brick ) welcome to monotone.
I mostly eat the same foods that I’m used to . Sensory texture and all that jazz. I hate hate crowds of people. Sometimes I have to do it ( like my nieces b.day party ) but I think about hiding at home once it’s done. I hate change. If anything changes. I don’t like it . Having bouts of ptsd makes my meltdown worse and I cry in the corner listening to emo music.
oh yeah also I’m on pip / esa have been since 2011 , but people think I’m lazy and never worked, I have worked and done many jobs but I’ve not coped and found it all too hard and plus I’m shit with people. I’ve been a barmaid , a catering assistant , a cleaner , doorman , I’m a welder by trade ( I’m not even getting into that)
I don’t really drink these days unless at home. Older I got more boring it found plus its masking and peer pressure when I drunk like a sailor ( borderline alcoholic I call it ) it was to fit in with everyone. some of those people were fake arse friends . I rather have whisky and sit at home with my cats.
before I started the gym I was depressed ( still am in a way ) I was underweight stressed and just came out a shite relationship. Ok I joined the gym in 2018 . But people think oh you can gym you can walk though walls . It’s for my own mentality to be fair as I’ve said before I be dead If I did not have the gym. Seriously … from the lack of help I’m not getting from the council social services is it not any wonder why I just feel like jacking it in.
Also I got told by doctors not to weightlift having curvature of the spine . But I overcome that , ok I can’t do squats and other exercises but I’m managing ok. I post my workouts just to show people who are in a shit show like me that It can benefit in many ways. I always put on my insta not here to be better or in a competitive it’s not me. it’s bad enough I have a wannabe who copies similar shit to me and it does my head in . Than she giving nutrition advice and pt advice its like your not qualified. You just go to the gym stop being something your not. Sorry adhd brain went there and I went of track. ( pet peeve)
I may add I have curative of the spine , gilbets syndrome ( hereditary liver disease nout you can do ) reason for not drinking like a sailor too. Low blood pressure ( I eat sweets to tame it lol ) so yeah I’m an old 98 Volvo with selletape to me.
Another thing I struggle with is I won’t eat in front of people I don’t know. Unless it’s a connection or I’ve know the person a long time. also if buses are full to the brim I wait and wait till next one is not so full. I’ve missed 4 buses waiting for near on empty. I don’t like getting approached in shops I walk out . Its like place your bets to see if I can go in the shop and get what I want without being asked . Can’t they see ma headphones.
I am very isolated and I do avoid people. I just don’t want to waste my time with people who are only out to take advantage.
I’m dyslexic too . I can’t fill in forms I hate them. I don’t understand the form questions. Sometimes I don’t understand letters . sometimes I don’t understand text tone or written or verbal words ( how the fuck am I still here ) I mimic doctor who phrases . I’m good a mimicking many accents I don’t know what triggers it . I’ve been like that since I was a kid . I used to do karaoke drunk yes I can sing while intoxicated lol . I sing at home now lol.
Obsessions/ doctor who / tattoos / clothes/Shakespeare / military / books / animals/ the gym / David Tennant.
Days when I’m not at the gym if weather is ok I feed the squirrels. Or I go into town for a coffee and a mooch . Other than that I tend to stay at home cleaning or in bed. all my blinds are close and sometimes I like to sit in the dark and in quite ish , well neighbour upstairs and ma mother downstairs .
Travelling like I say I plan ahead book in advance . Unless I know the route like the train to selby Yorkshire in july where ma uncle lives thats fine done it about 10 times or more. But other things i book months in advance , from train to hotel to actual looking at google maps and memorizing the road names and what’s near. Yes I do go on a random trip but them trips are routines to what I know. It’s not simple for me to go fuck it and walk out the door.
yes I can cook / clean and budget money ok but I have impulse to buy things with out due care . Its happened many times I’ve ate pasta for 2 weeks . Don’t worry my cat kids get there food. They come first than the Bill’s and I’m last. But I still struggle with money in a sense. because of this online shopping and klarna tis really bad . But I think it’s just a thing to make me happy than I’m like oh shit . Its pasta time. Better than not eating I guess.
I wear sunglasses in winter . Well anytime. I hate bright lights I have dim switches in ma flat . I look like a weirdo when I walk out in sunnies.
if there is too much noise say if I’m eating or where I am I just get out and walk to a quite spot. Town is the worse between 12 and 1 .
These are my struggles there is more but you get the jist
Well I’ve seen articles in my local paper that we getting money but tis going into young people ( 16 -25 , 18 – 25 ) community cafes like mental health ( which is great but what about us on the spectrum) 🤔
I’m pass my sell by date being 33 nothing here for us ..unless your an ex offender or that age range I’ve pointed out ..I’m pissed of to say the least ..why is nobody putting money into adults on the spectrum. But only doing mental health for the young.
Like people on the spectrum it don’t stop at an age limit . How the fuck is this not being looked at. I’m not getting at the mental health side , because I have PTSD and anxiety but its more my autism and support I need . And basic care or somewhere like me and others can go . Oh yes we have a place tis private and you have to pay £65 a day . Which I really don’t have. I would be in food banks and my cats would not exist.
It like they advertise community cafe and workshops for everyone ( erm no ) you have to be this age range have mental health oh and be an ex offender . Not for everyone than.
Northampton pull your finger out and get something done for us adults on the spectrum . We need somewhere to go to. And someone to put funds into our needs as well
Need I say more ? … welcome again to my useless council ( adult social services).
So where do I start ? , ok so about 1 month ago I sent off evidence that adult social services were breaching data. And not mine. Nope somebody else’s. They sent me out her financial assessment. And the women in question blatantly denied it ( well it is the council of liers and frauds ).
As a child I hated the silent treatment . And this is what they are doing. Because they have been found out. Oh and I’m still waiting for basic help. Yes I know I’m still here. And i am still on a long arse waiting list since last year. Which was supposed to change of a social worker asap. But no.
Have councils not learnt anything since the death of callie lewis ? Why oh why am I still fighting since 2017. Honest I don’t know how much more I can take in really really don’t. I’ve got enough on my plate as it is.
I’ve already told my mp , the council I’m hitting the I feel suicide thoughts everyday. And yes my doctor . And no one seems to give a shit. I just need to either win the lotto or have a some good omen because where I live it shit for people on the spectrum.
I’ve got added stress, with my pip review in july , and phoning these people and they not answering.
Really want to rip my hair out and climb a mountain in wales and scream. I just want to be surround by countryside and wildlife and quiet
I watched this documentary 4 times , and I saw a pattern happening with what is happening with others like myself on the spectrum.
like me and others , we are unique and we do find it hard to fit in make friends. we don’t feel human at all. The case of callie lewis I feel was a young lady ( younger than me 24) age is not number here . The issue is that this women was lost though a system and not getting the help she needed or support. She tried to take her life many times. And was unsuccessful. The mental health team would come out and ask her how she was. But they never monitored her. Kent county council was under staffed and people taking sick leave. Do I partly blame the council. Yes I do. Because like callie I’m in the same situation. My council won’t help me with basic needs.
I’m on a waiting list for a social worker which should of been given to me last year after the last one left due to change over . I admit I’ve been on the brink of not wanting to be here. Because there is things I can’t cope with or adapt too. Callie when she was lost though the system no one ( authorities wise checked on her ) despite the attempts she made . And I know with the mental health / Crisis people the say see you after you attempted that deed. And it about an hours conversation they send of what you said to the doctors and nothing is ever said again. ( I’m talking from experience here ) . I’m back on anti depressants . But let me tell you a story I have a record of overdoses with pills and doctors give them to me willy nilly ( nope I’m not at that point in my life anymore, I’m just pointing out a fact that doctors will do anything to get rid of a statistics ie your a number . Yes doctors are not qualified for helping people on the spectrum. But throwing pills left right and centre is not the answer.
when callie was lost on this system . She joined an online suicide forum , because she had no where else to turn . And not coping. I don’t know what was going though her head because being on the spectrum we are all different . But I reckon she felt . Let down and hey why is no one helping me supporting me. Yeah she had her mother . But the service is there to help you ( ie callie ) unfortunately callie traveled 350 miles away and took her life. Me , you or her mum will never know why this happened and how the nhs being strained and staff off sick . Led to callie taking her life.
I hope the nhs the mental health team can learn and take away from this. Of what happened to a young lady who was only 24 years old . Yes she was diagnosed at 11 with asperger’s syndrome ( now asd ) and at young age but somehow she got lost in system.
I be honest each day I’m barely hanging on. Because I’m fighting for support. Why should I be fighting for a support network when it should be given to me . 3 years and still nothing. I’ve even said to people only thing that keeps me going is the gym. If I did not have the gym I I don’t think I be here right now. And the honest truth. Hanging by a thread.
If you could take something away from this blog . Check on your friends . ask how they are.
If you feel like I do. Than take you mind off it and do what you enjoy . Like me the gym.
I’m hearing more and more case of people on the spectrum taking there lives and something needs to give . How many more before something changes?
Enjoy you sunday
R.I.P Callie Lewis 27th September 1993 – 29th August 2019 🖤