Kate – “My Asperger’s family”

When we were young, my brother’s shouting when he was upset used to go on for a long time and his inflexibility and refusal to do what was asked of him – regardless of the impact on others – made the house a place I found it hard to relax.

Luckily my hobbies of reading and crafts gave me the escapism I needed.  Despite being 18 months younger, I seemed to get the blame a lot, while my brother got off scot-free with just about anything he did.  My Mum blamed me for getting irritated by him – but she and Dad got irritated too!  I was expected to tolerate and accommodate his behaviour, without anyone ever explaining why!

When my brother was older, Mum just couldn’t cope anymore, so they scrimped and saved to be able to send him away to a boarding school.  That gave a lot of relief during my teenage years and I’m very grateful that they chose to do that, although my brother had a very hard time at boarding school because his behaviour antagonised other pupils and teachers.  He got the grades to do a degree in his favourite subjects – luckily these academic subjects are also his Asperger’s “special interests” – the things that he focuses in on and talks non-stop about, regardless of whether other people want to hear or not!

My brother was thrown out by Mum and Dad aged 22. At that time, he hadn’t had a diagnosis as even autism was something most people hadn’t heard of, let alone Asperger’s.  He’d somehow managed being away at university and got 2:1 in his degree, but him returning home was too much for my parents.  They found him a flat, where he lived in semi-independence, relying on Mum to calm down his emotional meltdowns over the phone, and Dad to give him enough money to cushion whatever kind of difficulty he was going through.

He’s never managed to get a job due to his poor social skills and somehow the Job Centre seems not to have spotted anything in his 30 years of signing on. They did sanction his benefits a couple of times because he wasn’t doing what they expected in his job search, which I suspect would be due to his “Asperger’s” way of doing things.

When we were both in our forties, Dad was diagnosed with dementia and Mum became his carer. My brother didn’t really understand how much help he needed, but in one of those unexpected moments that happens with Asperger’s, he once willingly helped my dad to have a shower.  All through his life, there’ve been times like this, when he surprised us all by suddenly making a leap forward in his understanding, or by being able to do something he’d never managed before.  This is something probably most people with a relative with Asperger’s can relate to!

After my dad died, my brother was evicted from the same flat my parents had moved him into 27 years before, as his increasing hoarding and lack of hygiene had caused damage to the flat.  Again, Mum bailed him out with enough money to pay the landlord for the damage.

My brother was studying online for a master’s degree and as he can only focus on one big thing at once, he couldn’t organise himself to find another place to live and wouldn’t go to the council or accept help from anyone.  Mum had been recently diagnosed with dementia and this might partly explain why, as his eviction date loomed, she found herself agreeing for him to stay with her – only for three months.

This marked the start of the most physically and emotionally exhausting three and a half years of my life.

Mum was always the one my brother would phone to rant and rave at when frustrated, until he felt better. She’d also advise him on practical problems, which were at the root of most of his “meltdowns”.  Mum’s language skills were the first things to go with the dementia and so she found this more and more difficult.

My brother struggled, as Mum now needed help herself to do things like online food shopping and kept interrupting him while he was doing his coursework for his master’s degree.   As a social worker, I could see the likely outcome for him if he stayed at Mum’s house, with her dementia getting worse and worse.  His hoarding began taking over more and more rooms in her house and most of the floors were covered with his things. Eventually she’d be likely to slip and injure herself, or wouldn’t be able to use the kitchen properly because of all the things piled up on the counters and cooker.

Also, my brother’s behaviour towards her was getting more and more abusive.  He’d shout at her until she was terrified and called me begging for help and saying she wanted me to take legal action to get him to leave – but after a day she’d forget what had happened and go back to saying that she couldn’t throw her son out, that’d be cruel – and what a terrible sister I was for suggesting it!!

With my social work experience, I knew that when things got serious enough, the council would need to get the police to remove him under safeguarding adults procedures – but he wouldn’t have anywhere to go and would most likely be placed in a hostel, where he’d be an easy target for any dodgy people living there.  I knew that if my brother had a diagnosis of Asperger’s, this would mean the council would have to consider whether this made him a “vulnerable person” and this might be the only thing that would save him from the dangers of a hostel.  My brother would always get very angry when me or Mum suggested he might have Asperger’s, so there’s no way he would voluntarily seek a diagnosis.

I was at this stage receiving phone calls several times daily: from Mum asking me to get my brother to leave, from my brother asking me to tell Mum to do what he wanted, from concerned neighbours, the local pharmacist, the police, when Mum called them – anyone who got dragged into their situation.  Social services were unable to help at this stage, as although they knew Mum was experiencing domestic abuse (verbal/emotional), every time they spoke to her, she insisted everything was OK and refused to take legal action.

Even though I’m a social worker, I couldn’t work out what else I could do to help my Mum and brother out of the situation they’d got themselves into.  Out of sheer desperation, I tracked down a clinical psychologist who’d been a family friend when I was a child, to see if she might be able to help me find some way of getting a diagnosis for my brother.

What she then told me opened my eyes! She said that it wasn’t just my brother who had Asperger’s: with her experience as a clinical psychologist, she’d also noticed that my dad and mum had both had traits of Asperger’s too!  Suddenly, my childhood experiences made more sense – the excessive punishments from Mum (such as making me carry my Christmas presents to the bonfire and watching her burn them, because I hadn’t kept them tidy), Dad’s withdrawal and indifference (too much for him to deal with at home after having to put on a “sociable” front when being around people all day at work).  So now I consider myself as having grown up as part of an “Asperger’s family”. The family friend I mentioned made it clear that she thought I was the only non-Asperger’s person among the four of us!

She then advised me to find a private clinical psychologist prepared to do a home visit without my brother’s advance consent.  After much soul-searching, I decided the risk to my brother if he was put in a hostel outweighed anything else, so I managed to find a private clinical psychologist prepared to do a home visit without my brother being aware of this in advance.  He stayed for four and a half hours and my brother talked almost solidly about his frustrations with my mother’s dementia, and his special interests for over four hours out of this!  The psychologist had a hard time getting a word in edgeways!

At the end, my brother somehow had the impression that the psychologist was there to deal with his complaints about Mum’s dementia, even though the questions had all been about him.  I was shocked! Somehow my brother’s habit of constant talking had for almost 50 years had masked how little understanding he has of people’s motives.

When I realised this, I was even more concerned about how he’d cope in a hostel, with the kind of people who might be living there.  He was furious with me when he received an A4 letter with the diagnosis and a long report on his difficulties.  I felt bad as I could imagine how hard that was for him – he must have been singled out for being different so many times in his life and this probably felt like the ultimate betrayal by his sister.

The situation got worse and worse between him and Mum. Social services did a safeguarding adults investigation and put a safeguarding plan in place for my mum.  Unfortunately, this didn’t help Mum at all, and I was getting just as many phone calls and emails as before, with people expecting me to be able to persuade my brother to move out.

I really wished there was another family member, or a family friend, who could intervene – but there was only me.  My brother had little idea of what Mum needed help with as her dementia got worse, so I was having to deal with paying bills, arrange household repairs and so on, as well as deal with their constant phone calls to me.

But then a few months ago, a miracle happened – my brother had to go to A&E and was admitted for urgent treatment.  He hadn’t been going for his diabetes checks and wasn’t managing his insulin well. This had led to a sore on his foot that he’d ignored and he was now at risk of having his leg amputated below the knee.

Now I knew just what to do to protect Mum! I called the hospital social work team, explained the situation and asked for a discussion about discharge arrangements.  I spoke to a very capable and understanding social worker, who took my concerns seriously.

For the first time, someone considered doing something called a mental capacity assessment, looking specifically at my brother’s ability to decide on where he should live on discharge.  And my brother – who’d just passed a master’s degree – was assessed as lacking mental capacity to decide whether he should return to live with Mum. Not because of any risk to him, but because he just couldn’t understand the ways in which his behaviour was putting Mum at risk.  He couldn’t even take it in when the social worker explained it to him. Somehow his brain doesn’t work that way.

The social worker did a great job, finding an emergency placement for my brother in a sheltered housing scheme.  But problems started immediately and staff from the scheme and the care agency still keep ringing me to ask me to sort things.

My brother sends long abusive emails telling me what a terrible person I am – and then asks me to do things for him, usually expecting me to do them immediately.  I’m still sorting out the damage he caused to Mum’s house as well as do all the things that paid carers can’t.

It’s a rare day when I don’t have to do something for one or the other of them, and some days it can take 2-3 hours, or most of the day.  Fortunately, I have a very understanding manager and can work flexible hours to fit around this.  But after so long dealing with the intense situation when they were living together, and then this, I became exhausted and I’m still not back to my normal energy levels… which in my 50s are lower than they were.

Again, I’m so glad I’m a social worker, as I know that I don’t HAVE to do things for my brother. Although it goes against the grain, I’ve started telling people that no, I won’t see if he’ll let me sort out his finances because he’s somehow not able to manage this himself now; no, I can’t persuade him to apply for housing benefit even though he’s a few months in rent arrears because he wouldn’t let staff at the scheme help with this; no, I’m not even going to try to persuade him to accept help with sorting out the dirt and clutter in his flat that’s already led to them raising a safeguarding alert, due to the risk to himself.

Sometimes, as siblings we’ve grown up going along with the idea that we should automatically help our brother or sister. But when we also have ageing parents needing help, and in some cases our own children or other major responsibilities, sometimes we will have to make some difficult decisions, especially if we don’t have other siblings or family who can help.

When I read other sibling’s stories, many of them seem to mention the fun times they manage to have together, regardless of all the difficulties and obstacles they face.  I’d like to be able to say this about me and my brother – but I honesty can’t.

I’ve worked hard to find positives in my brother in other ways, though.  I admire that despite all his struggles in life, he’s never said one jealous word about my successes, which have come much easier and much more often than his.  I appreciate his depth of knowledge about his special interests and his ability to stick with his degree and master’s degree through all the frustrations.

But although I love my brother and want to protect him, since childhood I’ve found it excruciating to be around him because of his constant talking, shouting and insistence that his needs and schedule override everything else.

I love him, but I don’t like him – and I’m sure there are many siblings who feel this way.