Today is world Autism awareness today, most people on the spectrum are proud and have pride in the condition I don’t I loathe living in this world with the condition because I do not fit in to life.
At school I was ridiculed for being and acting different always told to conform not to cry because I would be eaten alive for showing emotion. Not knowing why I felt the way I did I would often escape my reality, why I liked drama because I could be anyone but myself.
The older I got the more I got questioned about my autism. Sentences like “you don’t look autistic” or “like rainman” it also meant I was vulnerable and let people take advantage of me because all I wanted was to fit in and be liked and loved. It was during this phase I met my husband, we would talk all the time I would miss him and he accepted me for me we ended up marrying and having a little girl.
My fear for my little girl having this diagnosis being teased relentlessly, being used because of what I went through I was made to feel like rubbish by my peers because they didn’t understand and feared different and that’s why I don’t like my condition and do not wish it on my daughter
This is a little follow up on my post on Mrs Hinch. I recently joined a mum group happy mum happy baby based on the book by Giovanna Fletcher host of the baby club and the toddler club on Ceebeebies so I thought I would ask them for their clutter pictures.
I have not done the post to put down Mrs Hinch to put a stranger down who I have never met but to say, hey its OK to not be IG ready its also to give other mothers a break who may be putting pressure on themselves, they can also unfollow these IG pages.
Hey it’s OK
It’s ok to be tired and sleep when baby sleeps if you can
It’s ok not to have perfect hair or make up daily
It’s ok to have one of those days where caffine keeps you up
Ever wonder why people think Autism only affects men? It’s because women mask. They are more able to hide their Autistic traits until they get so tired the mask falls off …. then they are seen a childish.
I got diagnosed at 16. Quite late. Because I would modify my behaviour at school to fit in, not that it worked children can be and are cruel, which leads to a day of stress and releasing the stress at home, if your parents work then you go to the childminder and mask a little longer then as soon as you are home with your parents bang one outlet of Autistic traits and one big melt down with parents not having a reason because boys are showing this behaviour more readily so are being diagnosed
Then after the masking if left to mask comes the inevitable burn out when the Autistic person becomes so exhausted and masking becomes impossible and the Autistic person finds themselves in trouble with a world that doesn’t understand them which triggers anxiety, which can harbour very much real symptoms chest pain, headaches, over or underactive bowels, over or under eating.
People are starting to understand Autism but there are some people who need educating that not only are there Autistic adults, some of them are female.
My birth was rubbish. My care plan was ignored the care I received was sub standard. I even had a care assistant in my face. I get told to appreciate my daughter. I do I do appreciate her and I love her to pieces every day she is in my life is great but I need to day this.
Would you have accepted care where the wrong name was being used? No. Would you accept basic levels not being taken or not being left with a call Bell? No. Being left with no pain relief thinking you were going to die.No. Just because my beautiful daughter is with me doesn’t mean I have to accept sub standard care where my autism was not known about despite being in my care plan my husband not being involved despite it being in my care plan. I am furious and as happy I am to have isabelle I am so ridiculously angry with my treatment I was treated like a thing not a person with feelings and thoughts. I am allowed to feel robbed of my first experience of birth due to stupidity I am allowed to feel robbed of my maternity I am allowed to feel scared of the conquest hospital these are valid feelings. I will feel this way no one can stop me.
We have reached the point in the pandemic where people are literally acting like they were in school. Spreading rumours… Oh this is going to happen and that is going to happen. Fuelled in part by tabloid papers sensationalising the story.
Facebook doesn’t help. Unlike twitter you can’t block certain words from appearing and instead of cat memes you are confronted with the idea that things will never be the same again this causes me mental health to go downhill. It’s bad enough because of a last minute change (which people on the spectrum struggle to deal with) I can’t see my mum on my daughters first Christmas. But I have to deal with people scaring people by sharing tabloid articles which their main aim is clickbait to get money. My mental health has taken such a battering all I want to do is sleep until covid is over
I am a key worker I am terrified to go back to work with cases rising I am frightened of bringing this back to my young daughter I’m scared that this will kill me and leave her without a mum, leave my husband a widow. I can’t see any positivity and I can only see bad news that’s all I can see no way out of this. The rest of my life I will be risking my life to go to work. Care homes are always mentioned but no one ever mentions carers in the community
I am asking people to think of the source before posting think of the damage they will cause someone reading this
“You don’t look Autistic” “just stop worrying” “Just cheer up it may never happen” “you don’t need pills positivity heals all”. Have you heard any of these? I have all because you cannot see my neurodiversity. People don’t see a wheelchair or a walking aid and think all is well people are just being over dramatic and high maintanance and think it can be sorted with positive thinking…. if I could change my DNA with positive thinking I would have long eyelashes, be a foot taller all with the power of positive thinking. Think about it can you imagine the uproar if someone told someone in a wheelchair that with the power of positivity they can walk again, tell a blind person that they will become addicted to their guide dog? Both sound ridiculous but those with hidden disabilities experience this everyday
Take a day in my head I get up check my daughter is still alive, (SIDS is something that worries me ) check in with my husband see if he still loves me then have breakfast and a cup of tea. Take my meds I’m set up for the day, if my daughter sleeps for an hour longer than normal I worry. I look at my bank account see what’s due out. When I started on maternity leave money was a big worry and I would spend all day obsessing over it, with ASD it is very easy to become obsessed with things now I only check my bank on days I know money is coming out so I know a bill has been paid. These obsessive thoughts whirl round my head all day and my meds give me some relief.
Just because you can’t see something, doesn’t mean it isn’t real, it is an accepted fact that you breathe oxygen but you can’t see it, there is a load of people online belittling other people for not wearing a mask not knowing what is going on in their body. It’s amazing how many doctors have popped up in the last month dismissing invisible illness, some are even shocked at the abuse those with invisible illnesses get, like it’s brand new… it isn’t new those with the illness have dealt with this the majority of their lives. I am still waiting to find out what autism looks like.
Let me finish with this… those who are asking those with invisible illnesses to wear something to prove evidence. What does that say about you, judging those who can’t wear a mask or even worse abusing them for it… this is a hate crime and you can be arrested for it. I don’t look Autistic but I am the same as you don’t look like a bigot but here you are.
It’s OK not to be ok samaritans 116 123, shout 85258, 111
Not exactly anyone’s dream scenario, but having my husband the person that can calm me down rationalise and explain things I may misunderstand not allowed into my appointments, throwing in gestational diabetes and being involved in an RTC a week before your due date and three days before the induction of labour.
It’s Sunday the 14th June 2020, I spent the afternoon with my mum socialially distanced in the garden (FYI being nine months pregnant on a sunlounger does not work) I go home, feeling sick, so I assume I have spent too long in the sun have a bath and a lie down whilst my husband prepares dinner sweet potatoes chorizo and cheese…. I have some pains in my stomach take some paracetamol still feeling sick I then assume I am hungry so eat my dinner whilst listening to the podcast we always listen to on a Sunday so there is some sense of a routine 7.30 I had just finished my dinner a d realise the pains and sickness were not pains and sickness, it was the start of things. I am so worried because I am due to go in to be induced tomorrow, at the sweep earlier that day they said my cervix was nowhere near ready. I ring the hospital they invite me in and I am put on a monitor they check me over I am in labour but not in enough labour to be admitted and I would be better off with my husband, so I go back with my husband having taken some more pain relief that wasn’t touching the pain, advised to try and get some sleep (haha) I go home have a cereal bar run another bath this eases the pain until I get out I am screaming in agony, I ring triage again who suggest I can take a paracetamol at 2am so I hold out until 2am take some paracetamol and ring my sister and told her to get my mum they talked my through until 3.30am when my waters broke and we went to the hospital my husband had to wait outside whilst I get checked over 2c dialiated he was sent home as had forgotten my notes at 6am I am taken to delivery suite as my daughters heart rate had dropped this was when my husband was allowed in.
This was the worst part of labour. I had been put into a room that didn’t have the right nozzle for gas and air, I am begging for some pain relief and they were focused on putting a canular in my hand I am panicking in sensory overload and rember being told to calm down, like I was a child who had been naughty the team left the room for handover and more telling me to calm down, my husband had to tell them I am Autistic, I remember the nurse saying to the team right we have Autism at play here and we’re kinder to me they kept telling me my blood pressure was high I should take the gas and air when I felt a contraction which I struggled to time properly so couldn’t get it in time for the contraction, I later learned I was contracting 4 in 10 minutes more time passed as I was so anxious they agreed to give me an epidural at 9.00am just before this I started to fit, nobody knows why though I do have my suspicions the epidural goes in and I go from 5cm to 8cm within ten minutes again my daughter’s heart rate goes down and the decision to use a kiwi, a little suction cup was made to make the delivery and she was born 06l s 8oz bundle of perfection.
My experience during the labour and people not understanding autism in adults was why I chose to start this so I can give views of an adult world through an Autistic brain. Welcome to the Autistic Adults Club
Where did all the children on the spectrum disappear to? Do they suddenly outgrow their condition? Did they hop on a boat and go onto their own island? No! We grow up, we become adults with our own lives and interests and some of us even go on to drive and start our own families.
What I have found being part of the Autistic Adulting Club is that there is very little support for those adults on the spectrum unless you are low functioning. Those who have what used to be known as Aspergers syndrome are pretty much left to find their own way and when their Autistic traits come to the fore because masking can only last so long they are often ridiculed.
So what is it someone on the spectrum needs, they need reassurance things are going to be OK, they need time to themselves and most importantly they need a rough routine and if it changes to be told what the changes are in advance so they can prepare for those changes, we don’t “freak out” unless we are kept in the loop, like most adults we are just not as good at hiding frustration.