• Welcome to Autism Forums, a friendly forum to discuss Aspergers Syndrome, Autism, High Functioning Autism and related conditions.

    Your voice is missing! You will need to register to get access to the following site features:
    • Reply to discussions and create your own threads.
    • Our modern chat room. No add-ons or extensions required, just login and start chatting!
    • Private Member only forums for more serious discussions that you may wish to not have guests or search engines access to.
    • Your very own blog. Write about anything you like on your own individual blog.

    We hope to see you as a part of our community soon! Please also check us out @ https://www.twitter.com/aspiescentral

'I knew I wouldn't be a good mother. I just wanted to be sterilised'

AGXStarseed

Well-Known Member
(Not written by me)

How Rose Hughes, who has Asperger’s, fought a long battle to convince doctors to take her seriously
5792.jpg

Rose Hughes: ‘My mum and dad always understood my desire to be sterilised.’ Photograph: Emmanuel Fradin for the Guardian


I don’t want to be a mother, or even take the risk of finding myself in that situation. I have Asperger’s, and although many people with autism make great parents, it’s not something I feel able to contemplate. I simply don’t have the reserves or instincts to look after another person properly – but I still want a fulfilling sex life.

I’ve tried five types of contraceptive pill, but all of them caused psychosis, violent outbursts and extreme behaviours. I am bipolar and also have Addison’s disease (a rare disorder of the adrenal glands). Other forms of contraception, such as the morning-after pill, were all offered and abortion was mentioned, but the one thing no one would speak to me about was sterilisation.

I like to think that the public has a better understanding of people with disabilities these days and recognises that we also enjoy sex, but every doctor I asked about sterilisation tried to put me off straight away. No one wanted to discuss it. But since the age of 16, I have been convinced it is the answer for me if I want to be sexually active (and I do!).

When I was younger, I had every label under the sun attached to me: precocious, dramatic, difficult. I did everything far too young and lived life at top speed. My parents suspected I had Asperger’s as both of them have it, but I was only diagnosed in January 2016.

I’ve felt different for as long as I can remember. I was a weird kid, though I had friends. When we all left primary school at the end of the final year, we emptied our lockers and my friends took their belongings home. I simply assumed I wouldn’t need them again, so I dumped my winter coat, books and PE kit in the bin. The teacher called my mum to tell her and I genuinely couldn’t understand why what I’d done was a problem.

School wasn’t the best environment for me for a long time and I was expelled at the age of 16. I was a nightmare pupil: smoking, truanting and hanging out with much older kids. No one understood me until I was sent to boarding school, where a teacher seemed to sense I was on the spectrum and approached me in a different way. School improved after that, but I was always in the throes of some destructive relationship.

From the age of 15, my relationships had been chaotic and damaging. I didn’t have a good sense of self, went for the wrong characters and became very needy, so they didn’t respect me. My sex education didn’t help because self-respect wasn’t addressed and neither was disability. I even had an ex ask if Asperger’s was contagious. I often struggled to feel sexy after that. I blew everything out of proportion.

But then something terrible did happen. After getting drunk, aged 15, I had unprotected sex and got pregnant. I had an abortion.

It took me a couple of months to tell my parents. They were so sad for me and said they wished I’d told them so they could have supported me through it. My mum remembers me, aged seven, saying I never wanted children, and although I was very young to be thinking that, nothing has changed since. I’m not very nice about children and am uncomfortable around them. Being pregnant confirmed that this was something I would never want, so sterilisation seemed the best option.

My mum and dad always understood my desire to be sterilised since I first told them, but I could never have imagined what a long battle I would fight for doctors to take me seriously.

I always felt I wouldn’t be a good mother for all sorts of reasons. This isn’t being self-deprecating but self-aware – to look after myself and have good relationships, I’ve had to learn to be brutally self-aware. I wasn’t looking for sympathy from the medical profession, but understanding would have been good.

All that doctors would say to me was, “You might change your mind; you’re too young to decide something so major; have you thought about different contraception?” Pregnant women are offered screening and possible terminations for genetic defects, yet someone like me wanting to make sure they’re never in that position is regarded as strange.

I couldn’t believe it when a doctor finally listened to me. But even then it was a long road. I had to convince a second doctor, a surgeon and a psychiatrist that this was the right decision. After they all agreed they still looked as if they were giving me the worst news.

On the day of my operation, I was up at 5am, partly because I had to be there early but also from nerves. I’d waited eight years for this and I knew my mum was thinking the same. Neither of us could quite believe it was happening. Having Asperger’s means that I can get anxious very quickly but, to start with, I was all right.

After getting changed into a surgery robe and hat, we went to a room to have my injections and get my drip in place, but the student nurse struggled to get the needle in. She tried one hand and when that didn’t work she tried the other hand, and it was very distressing.

I still felt very agitated when I was taken to a room where various men and women were milling about. They were obviously all medics, but no one introduced themselves or explained what their role was. There was a gynaecological chair that I was ushered into, and then they began to remove my clothes and attach wires. They didn’t ask me before undressing me, which made my anxiety worse, but I tried to focus on finally getting what I wanted and held tightly to my mum’s hand.

Maybe I was oversensitive, but I knew no one was best pleased about doing the procedure and, right up until I got the general anaesthetic, I was still being asked if I had any worries or regrets. But I had none.

When I woke up, all I felt was relief. I’d got my body back after fighting so long for something that other people considered controversial, but I believed it to be absolutely the best for me. Now I can enjoy a full sex life with no fear – and that should be the right of every disabled person.

My Instagram account is how I express a love for the naked body or for muscles. Some people – including ex-boyfriends – view my behaviour as attention-seeking or wrong, but I don’t agree. I am highly aware that I am viewed as provocative, but I see things differently. To me the naked human body is beautiful. It’s art, it’s so expressive. I’m now in a good relationship with my supportive and understanding partner, Rob, who knew from the outset that I had Asperger’s and doesn’t make a big deal of it so I don’t feel needy, just that we’re a team. We’re both into powerlifting in a big way – Rob is Belgian champion and I have a big Instagram following. I’m very grateful to the doctors who finally took me seriously and gave me my life back.

All those close to me understand why I did this, and as for anyone else, does it matter?

@rosefitrehab


‘Sterilisation is an effective and permanent form of contraception’
Until the 1980s, there was enforced routine sterilisation of many women with disabilities, but today families or social service departments bring cases to the court of protection, asking for a person to be sterilised for their own good. Each of these cases is judged on its own merits. Rose appears at present to be unique, in that she was asking for sterilisation for herself. There are no rules or laws regarding the age at which a woman can choose to be sterilised, but there is guidance from the Royal College of Obstetricians and Gynaecologists, the Faculty of Sexual and Reproductive Healthcare and the General Medical Council. These organisations say that, in addition to assessing capacity to consent, doctors should explain the benefits and risks of sterilisation, and also the alternative, highly effective, safe and reversible methods of contraception. The surgeon must be assured that the woman has all the facts, and has understood them, reflected on them and made her choice. The patient should also be aware that a reversal operation is difficult, and not available on the NHS.

Dr Kate Guthrie of the RCOG says, “Female sterilisation is an effective and permanent form of contraception for women who have decided they do not want any children, or further children. We believe that women should have fair and equal access to all methods of contraception, including sterilisation. They need clear information about the risks and benefits of the procedures as well as alternative methods, offered counselling where appropriate and be supported to make an informed decision that’s right for them.”


Source: 'I knew I wouldn't be a good mother. I just wanted to be sterilised'
 
I wonder if the resistance she faced is sort of like "backlash" from the very recent forced sterilization of people with disabilities.....like the medical community was terrified of making a mistake in their assessment of her, or simply terrified that they will be judged like the doctors who forcibly sterilized people (without/without enough consideration for the autonomy and well-being of their patient).
 
I'm pleased she didn't give in or give up.
She knew what was correct for her own personal circumstances and persisted. Resolute against advice to the contrary.
 

New Threads

Top Bottom