“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.