“Pregnant & Winging It” is a short series about a first-time pregnant Autistic woman in Nottingham. Claire writes about her views and experiences around pregnancy and how it’s not all as she expected
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First Step: Declare
So here I am, I am 35yrs old, Pregnant, and not a clue what I am supposed to do next.
This is me at 2-3weeks, it’s late November and the only thing I am completely certain of at this stage is “declare your condition to a medical professional”, so off I go to the GP to do just that! I wander up to my GP Reception and ask for an appointment and get the usual “what is this for” and I happily declare that I am pregnant and the response I get is whether I want to “discuss my options”… I am very confused as to why the first place we’re going is to the discussion of whether I am keeping the baby or not…
Turns out, if you are pregnant you don’t see the GP unless there is an issue or if you want to discuss terminating your pregnancy.
So that’s me schooled at the first hurdle!
There are multiple teams of midwives across Nottinghamshire, if you check out this link, and scroll down to “Community Midwives – Contact Us” you will find the address and phone number for your local team.
Second Step: Make Contact
If you clicked on that link, you will have noticed that it is only phone numbers that are available to you. I phoned the number and it’s not actually a functioning phoneline in the sense of you call it and someone answers, this is just an answerphone service.
So what happens is you call up self refer; leaving your details and they will call you back when is convenient for them. They will call you at a random time, from an unknown number, and leave you no answerphone message.
I had to call and leave my initial message a good few times before someone left a message to say they would call randomly, from a private number, and I needed to just answer it.
There is no advice or information given to you if you have a disability that prevents you from accessing phone calls, it is expected you can just use a phone!
I had my mobile routed through my work computer so that I could get the automatic subtitles up for this first call, especially as they were calling 9am-5pm on a weekday.
I disclosed at this first call all of my conditions, including being Autistic, and that my auditory processing isn’t good enough for phone calls. Videocalls, just about. As someone who is a proficient sign language user I can lipread reasonably well so watching a person, listening and lipreading gives me enough information to process.
This didn’t get noted on my file.
Once we’d done the basic information to get me set up I was told they would just summon me to an appointment. This means you get a letter in the post and you just have to turn up. If you can’t make that appointment? Well, it’s another round of “call and leave a message and we’ll respond eventually”
Third Step: Communication Breakdown
I was sent a letter around 7th December to tell me to come to an appointment 15th December. This wasn’t possible as it was the last working day of the charity, and payroll, so I needed to be getting everyone paid and everything shut up for Christmas.
I called almost daily to get it changed and was lucky I had someone with me to answer the phone and support the change of appointment because as I had said earlier “cannot access phone calls due to disability”.
I was given an appointment the following week, very close to Christmas but still no alternative method of communication.
It is now March and I am having to go through PALS and the formal complaints procedure because I have still not been given any alternatives.
As someone who was previously a sign language interpreter I wonder what they do for Deaf patients? Deaf people don’t have access to an interpreter 24/7 and they barely even get one at their GP appointments so how would they be expected to get in contact? It may be the case there is a good alternative for those who are sign language users, but, not all people with a hearing loss can use sign language… I’ll keep you posted on this one.
Summary
You will need support to organise and coordinate appointments and you will need to be steadfast in what you need.
The amount of tests, scans and appointments you need to attend to ensure the health of you and your baby is very long so if you’re planning on having a baby in the future please have this in mind.
I bought a display book and have used that to put in every letter I get in timeline order so I can flip through and see what appointments are happening and when. I also send these through to my care provider (because I have a PA who can support with appointments) and let them know what I need, if anything, for the appointments).
I will also say that your Employer has to let you have time off (that isn’t from your annual leave) for all maternity related appointments. When I speak about not being able to take time off work that is because I am the CEO and it’s not always possible for me to walk out of work, so I’m making that decision for myself not anyone else. If your Employer is making it difficult for you to take your appointments please contact ACAS.
Autistic Nottingham 