I am 51 years old and my brother is 61 and has high-functioning autism. I was conceived specifically to be a support to our elder sister, as our parents did not wish for her to be a sole carer of our brother when they were no longer alive.
The planning for my brother’s future started very early. And this is how it has always been: my brother’s needs have always been at the forefront of our family lives.
I am not bitter about the situation; I have grown up knowing that over time, my brother is going to need my help and I when the time is right I will be willing to give it. My older sister has felt the same, but we can’t help feeling fatigued and frustrated with the situation at times. Sadly our younger sister, conceived to be a second helper, has since passed away.
Growing up with an autistic brother has not been easy and at times I have resented him and been deeply embarrassed by him. Having a ten-year age gap has not prevented him making passes at my friends, or worse trying to kiss them! This was particularly a problem when I was around 13 to 15 years old. He feels as though he is still a young man at 61 and still goes for young girls, which gets him into trouble at times. He will not listen to any advice and we are constantly fearful that one day he will end up being arrested.
As a young child, my brother used to take pleasure in playing with my hair. He used a ploy of persuading me to let him play at being my hairdresser. I can remember being about five years old and him being 15. He would sit behind me pulling my hair into styles that were agonising. Despite my protestations, he would pull harder and harder to achieve his required goal and my head and hair was a mere object to him. His 'play' developed into jumping at me from behind and pulling my hair or flattening it down so hard at the parting that I cried. Over time, I developed nervous twitches from being so frightene. My parents had to take me to a special hospital for treatment.
Other problems arose during my puberty. In order to be popular, my brother would mix with anyone who would have him in their group. My parents were very happy for him to have friends and would allow them to come into the house. I remember one in particular who used to tell my brother that it was perfectly normal to touch your sisters sexually. He decided one night to show my brother what to do and lay on top of me whilst I was in bed. Luckily, my brother seemed to know from my cries that this was wrong and he stopped his friend. If asked, he can remember this incident and does not know why he stopped his friend, but knows that he helped me. I shudder to think what could have happened.
As a parent myself, I have always had this in mind and feel that safeguarding the siblings and younger members of the family from not only the person with autism, but also their friends, is vital and something that can be so easily overlooked.
Our mother was an extremely forward-thinking woman and she planned for my brother to live independently and trained him relentlessly for this. She made a case to the local council in 1978 (a few years after our father died) to house him into a difficult to rent flat that was at the end of our road. He moved in gradually with our support and made the transition from dependence to independence over about a year.
As our mother got older and needed support, she moved away from him to live near me and his vulnerability and his dependence on her then became much more apparent. He was constantly picked on by neighbours, mugged in the street and accused of being a 'nonce' because he is fascinated by children playing in the streets and can sometimes inappropriately stare. It was obvious that he needed help and my husband and I decided to move him closer to us and our mother, rent a flat to him and become his landlord.
My brother has qualified for housing benefit to pay his rent, but we have accepted a much lower rent than market value. He causes us no trouble and in fact it is easier to manage this situation because we have some control over the tradesmen we choose to do repairs and these tend to be more sympathetic towards him. However, as our sister lives over 120 miles away, I have become his main carer too, which places a considerable burden on me.
As my brother is ageing, and we are too, it has become imperative to consider the future again. We cannot be his landlord and carers forever. I feel that having had a lifetime of considering his needs, bringing up our own children who are now almost off hand and caring for our elderly mother, it is now time for us.
However, my brother is no longer receptive to the idea of a move. He wants to remain where he is and we are having difficulties identifying what will be a suitable residence for him in older age (if he even agrees). He does not fit in with people with learning difficulties but neither does he fit in with older people who don't have autism. If he mixes with people with mental health problems, he then takes on their various manifestations and convinces himself that he is either depressed, hearing voices, has seasonal affective disorder and the like.
We have approached the local authority and as he is not considered elderly, physically or learning disabled, and does not have a critical or substantial need (under Fair Access to Services criteria) he does not meet their criteria for assessment or services. I think that as he gets older, he will eventually reach a crisis point and there will be no choice but for him to move to somewhere more supportive. I have no idea where this will be or what will be available. I fear that one day we will have no choice but to force him to move and leave him to the mercy of the local authority if we cannot continue to support him, and this is something that haunts me.
I do not know whether we did the right thing or not in agreeing to support him the way we have. It raises dilemmas which no-one should have to consider.
We desperately need to pressure local housing authorities and social care services to consider the housing and care needs or older people with autism. Planning is needed earlier than the general population so that the person can make links and possible friendships with others who can support them. It should not be left to the siblings to do this with no consideration for the impact on their lives and freedom.