Tag Archives: autism

Change

There is a myth that people with autism cannot cope with change. This ‘catch all’ phrase is often used within services for people with autism, and sometimes this becomes an expectation that is created by the staff – a situation where ‘my attitude affects my behaviour which affects your attitude affecting your behaviour’.

One person that I supported had a weekend holiday booked to Paris. On the morning of their departure the staff supporting her came to the office and asked for her passport (normally kept safe with her paperwork). We searched and searched, but couldn’t find the passport. This meant telling the lady and consequently upsetting the planned routine of the holiday as she had come to expect it. We eventually found the passport, but not before the plans had been severely disrupted. The lady and her supporting staff member missed their train.

They managed to catch the next train, leaving them short of time, but just managed to get to the Channel Tunnel on time. At this point Customs decided to search the lady’s handbag.

They got to Paris without any further problems. That evening they decided to go for a walk and explore the surrounding area. They both became a little disorientated and lost their way back to the hotel. In fact it took them about an hour of walking in circles before they found their hotel.

The following day they decided to do what holiday makers do and see some sights. They began with the Eiffel Tower, getting the lift up to the second floor. However, just before the platform the lift became stuck. They were now in a small cramped, crowded and noisy area waiting to be rescued. It took over half an hour for the lift door to be opened, with all the occupants having to step up to get out. To add insult to injury they then had to get down the Eiffel Tower by the steps – all 674 back to the first level and then as the lady refused to get the lift back to the bottom, they had to walk the further 347 steps back to the ground.

The next day, in order to play things safely, the staff member and the lady decided to get a tour bus to see the rest of the Parisian sights. Being unused to the traffic of the city, this was an ambitious challenge. And in keeping with the rest of the weekend, this too bought with it another test for the lady. The bus had a collision with another vehicle and they had to wait for a second bus to take them back to their base.

Thankfully the final morning and travel was without major incident.

On their safe return to the residential home, the staff member filled me in on their hapless holiday. She adamantly stated she would not be available to take the lady away again. I sympathised (in best ad hoc supervision style) and questioned just how many incident reports she would need to complete.

The staff member looked at me incredulously and told me that there had been no incidents, the lady had been composed throughout all of the trials that she had faced and other than natural irritation she had kept her cool and accepted each ordeal without any of the agitation that we have had to deal with on a daily basis.

I asked her why then was she so resolute in not supporting the lady on another holiday, when she had so obviously coped extraordinarily well with all of the change. The staff member agreed, she had managed well, but what she could not handle was the repetitive communication that she had had to continually listen to, with no chance of abating that had occurred once the lady realised that the maid in the hotel had been into her room and slightly, just slightly, moved the position of her flannel on the sink….

 

…but words will never hurt you…

Eedy has always been great at beating the system. Being in care from a young age, he has had years of experience in working out how his care teams tick, and what will aggravate them most.

He’s learned that when he has a female staff team there will always be some of the team that cannot cope with hearing the ‘C’ word. No other expletive holds so much power. Four letters of total immediate effectiveness. So, with that in mind he’d regularly drop the ‘C’ bomb to get the reward of cringing staff, reprimands and the general benefit of another’s discomfort. Not forgetting his on going enjoyment from that change of tone emitted from a person shocked!

In his early teens he found himself in a situation where he was only allocated male staff. And dropping the ‘C’ bomb lost some of its power. Nonplussed Eedy decided to find an alternative.

The first I heard of it was a frantic call from his social worker. “All the staff are refusing to work with Eedy!” I tentatively asked why, how could a whole staff team refuse to work with my boy? “It’s because he’s calling his staff ‘paedophiles’.”

Eedy had found the one word that could do most damage. His staff were all local to the area in which Eedy lived and could not cope with people in their community hearing his new favoured phrase ‘You’re an effing, jeffing …’ etc. Fear that locals would put 2 and 2 together and make 5 was a real worry and that they could be tarred with the ‘no smoke without fire’ brush.

The social worker asked for advice. She suggested formally writing to Eedy (on headed notepaper, no less) and firmly telling him that this was unacceptable. Eedy can be a bit of a jobs-worth at times and authority occasionally would hold some power, so I agreed it was worth a try and she sent me a copy of the letter before it was sent.

Throughout the whole letter it referred to ‘a bad word you are using’ and ‘calling your staff a word that’s not nice’ never once was it spelt out which of his repertoire was the cause for concern. I pointed out that perhaps this was giving the word more power. I also pointed out that because of his autism, Eedy is very literal. He’s not going to work out the inferred word or the inferred threats that his staff wouldn’t want to work with him.

She changed the content of the letter. But not before she had told me that she was very unhappy to do so as she didn’t want to put the ‘P’ word on paper.

Eedy got the letter, ripped it up and threw the paper out of the window. It didn’t work. His staff did keep working with him and to this day he is gifted in the use of phrases and words aimed to provoke shock and gain a reaction.

Off target…

At one point when Eedy was in his early teens he was assessed as needing male staff only. This had come out of the blue, so I questioned it with his then care provider. “It’s all legit,” I was told, “it’s from his risk assessment”. I further asked if his aggressive behaviour had increased without my knowledge. It hadn’t but I was firmly informed that Eedy had a history of ‘targeting female staff’, and the management of this was to ensure he only had male staff supporting him from now on.

Funnily enough, I was still able to have Eedy home. I was still able to go out with him. I was still able to drive a car with him as the single passenger. He could still be on his own with his little sister. And even funnier… we didn’t feel there was any threat.

So Eedy’s staff team became male. He came home one weekend, shortly after the changes, and I asked him if what he knew about it all. “I target females,” he told me. I asked him if he knew what that meant.

“Oh yes”, he replied confidently “It’s when I run at the women to get them to make those nice high pitched squealing noises like Nanny does!”

Me: …..

A hyperactive protest

When Eedy was young, shopping was his least favourite activity. Usually his mum would round up a willing second adult and in true one to one fashion, Mogs would be allocated to one adult and Eedy to the other. It would be a squirmy, wriggly type of trip. Eedy would treat the many grabs and holds as a challenge to win, success rated by his ingenious methods of writhing out of the holds and running as quickly as he could towards whatever opportunity presented itself first.

He had a few favourite ways of alleviating the boredom he so obviously felt. And if he succeeded in a triumphant release from ‘The Adult’ he had his escape route planned to perfection. In no particular order, these favourite escapades were:

  • Scooting towards the nearest door in a shop marked ‘staff only’ and heading inside without hesitation. Leaving The Adult to run behind, grasping at his jumper, his trousers, his arm… anything that could stop the rapid path of hyperactivity whilst issuing apologetic words and glances in response to the disparaging looks and scaving comments of the shop staff
  • Bolting towards the checkout and with immense superhuman reach (way beyond the natural scope that a child below the age of ten could possibly have) pressing every possible button on the till. This particular escapade would again leave The Adult red faced and apologetic in the midst of judgemental tutting, and scornful comments. All said heatedly to the piercing tones, bleeds and alarms from said till.
  • Scarpering at full speed towards the nearest elevator – a successful run was that which resulted in Eedy streaking through the lift door just as it was shutting, leaving The Adult aghast as the doors shut. After a harassed sprint to the next floor for The Adult, Eedy would be waiting just outside the lift, ready to run amok around the shop with The Adult in hot pursuit, flustered, harried and by this time pretty damn angry. (The anger of The Adult would directly correspond to the level of excitement Eedy felt that was shown by a wild demonic smile of victory and wringing hands)

Perhaps in Eedy’s repertoire, his greatest moment came in a music shop. He had been particularly calm on this occasion, so the iron cast grip had been somewhat relaxed. All had gone well for a couple of shopping trips and The Adults were beginning to optimistically believe that Eedy was maturing from his anti-shopping campaign. Eedy, never one to let an opportunity go by, seized the moment. He twisted out of the hold and ran towards a gentleman in a wheelchair, pushing it forward with all of his might. The guy in the chair must have felt the sudden surge, and on turning around could not see Eedy as his height was below that of the backrest. He shoved again and all that could be seen was the horror on the guy’s face as he turned back to face the front and the penny dropped – his chair was heading straight for the shop steps to the basement. It was like a slow motion movie. Eedy pushing with all of his might, The Adult leaping forward to intercept him and the guy grabbing at the wheels of his chair to halt the forward momentum.

It all came together at the eleventh hour. Eedy was grabbed. The wheelchair was halted within a hair breath of the steps. Situation aborted (other than some very unhappy adults).

This was a full on win of a situation for Eedy. No amount of chastising could wipe the grin off his face and the excitement as he jumped up and down, wringing his hands together in glee. The victorious phrase of ‘Find the wheelchair man’ became a regular refrain for months after.

He still loves to be told of the story now. Fortunately he has matured from this stage of his life, but the stories, recounting each and every misdemeanour still bring him great delight and laughter.

Police checks

Just before Eedy was eleven years old he was being ‘looked after’ by the state. His father didn’t have any contact and I was his only family link/visit. His sister lived with me, indeed, it was okay for him to live with me, only I’d said I couldn’t cope.

I was grieving my sister; he was grieving his mother.

His sister didn’t display aggression …and didn’t need 24-hour attention. The cracks were showing in my marriage, then-hubby and Eedy hated each other and both presented ‘challenging behaviour’ in different ways (!).

I turned to the social care system for help. I’d been an aunty for the last 10 years.

But not a mother.

I couldn’t cope. I needed to continue with my full time job as a residential care home manager in order to pay the mortgage. Actually, I’d not asked for my life to change, so I didn’t want to give my career up. I’d already moved from one employment to another in order to be closer to home and have less shift work, but Eedy’s behaviour made it untenable to work full time and be on the ball.

The social care system did provide some support. I was allocated one weekend a fortnight’s respite for Eedy. This was at a children’s respite service. All was good there. Eedy was safe and I had some space. Eventually though, it wasn’t enough.

All I could see for the rest of my life was our fortnightly break. The marriage was getting worse, more volatile, more irretrievable. I turned again to the children’s service. I was told that due to the ‘priority’ they would be able to offer me the use of an ‘intervention team’ who would look after Eedy from school, through to around 7pm. The thinking being that he would come home and go to bed (like that happened – ever!) I refused. All I could see was this continuing until the funding was withdrawn or until he showed the slightest improvement in his behaviour.

I was told there was no other option. I was pushed into taking Eedy to the respite centre and phoning social services saying he couldn’t come home on the Monday.

Where I was right then I really had no choice.

Eedy stayed at the respite service for 4 weeks (during this time described as a bed-blocker) as no other children could go for respite due to safety reasons because of his behaviour. I was able to visit, able to attend meetings, but as he was no longer living with me I no longer had any rights other than that of a ‘concerned relative’. I didn’t have parental responsibility. His mother had cited in her will that I should have guardianship – but this was not recognised in a court of law. Fast forward to Eedy’s going into ‘the system’, foster care, then back to respite care, then finally into residential care and I was told he could no longer come to stay (but for some reason he could visit) …because I had not been police checked. It kept being mentioned, we were told every person who was likely to turn up at our home when Eedy was there would also need a police check. We were never given the forms.

We didn’t have him overnight again until he was 20.

Aftermath

cealIn the weeks after my sister’s death social services were sadly unavailable. It was the Easter holidays, so could I wait and someone would get back to me? I found out afterwards that things would have been different had I cared for the kids at their family home (a housing association house). This would have flagged up an ‘at risk’ priority as the kids would be homeless as the tenant holder (my sister) had died. Empathy at it’s best! Because I took the kids to my house, they were deemed ‘safe’ and therefore not a ‘priority’. Work that one out?

I don’t really remember much about this time. I was pretty spaced out on grief and wine – the only thing that could get me to sleep. The newspapers kept calling, and a part of me felt that was so, so right. It was, to me the biggest news ever, so no wonder the media were interested. I opened my door one morning and experienced the life of the famous – that fluffy boom thing in my face and a reporter asking me to comment. I didn’t. But I took the decision to talk to a local reporter. I don’t know what he said that was different, but my instinct was correct. I told the reporter from the Exeter Express and Echo I would only talk about my sister, not her treatment or her family life. He reported without variation other than the headline ‘Local woman dies from flesh eating disease’ and explained that the local paper was affiliated to some of the nationals, so a three page spread in the local rag, and a column on page 3 in the Daily Mirror. My sister would have been proud! Fitting for the immense grief I was feeling.

It was odd really, people’s interpretations. On the day of the newspaper reports I was shopping in my local precinct and felt an odd feeling of ‘that’s the right thing’ when I saw that she had made the billboards outside a couple of newsagents. I got back home and the answer phone was flashing like mad. They had used the photo they had from a trip to Lapland, financed by the local charity ‘Dream-A-Way’, so anonymity was futile. Countless calls from Mogs’ headmistress telling me to call her and warning me of the media interest. I spoke to her, but could tell that she was completely baffled when I told her I wasn’t going to walk a different way home as so to shield Mogs – I was going to take her home and read the paper reports to both her and her brother. We agreed to disagree.

That evening Mogs, Eedy and I went through the newspapers and they laughed at their photos. In the midst of the heartache we smiled, I cried, and the kids reminisced.

Bereavement

I’d always been close to my sister.

When her marriage broke up, leaving her as a single parent to two children; my nephew (aka Eedy) aged 3 with learning disabilities, autism, adhd and microcephaly and my niece (aka Mogs) of eighteen months – also with microcephaly (and the diagnosis of autism yet to come.) I was there pretty often, playing the role of the second adult in their life. Helping at weekends with the parenting and hopefully sharing some of the strain. She coped really well (although she would have described it differently), she didn’t get much of a social life, and couldn’t even think about paid employment, but she resourcefully spent her time studying for an open university degree in psychology, involved in the Guilliam-Barrie support network and co-running the local adhd support group. She was the extrovert of the pair of us – thinking nothing of talking her cause and expertise on local radio and national breakfast TV – citing the perils of living with and bringing up a child with autism and extreme adhd.

By the time the kids were 8 and 10 she was 4 years into her degree work and had her first serious relationship since her marriage breakup. She’d had health problems in the past. Terrible migraines that her GP had misdiagnosed as stress and prescribing anti-depressants that she stopped taking within a week because they zapped her energy– her optician eventually realised these were caused by a detached retina – most probable cause the toy box her son had chucked down the stairs which had landed on her head.

But nothing compared to her final illness. She began to complain of a pain in her left shoulder blade on Tuesday, stating that it was horrific and beyond words. The doctor and NHS Direct gave advice to take painkillers, heat compresses, and don’t over strain. By Wednesday she wasn’t sleeping due to the pain and called me to pick up her daughter from school, as she felt unsafe to drive. More calls to medics and the same advice. By Thursday my then-husband was taxi-ing the kids and by Friday he went back to the house after the school run to take her (with or without permission) to the hospital. They gave her morphine for the pain and admitted her, believing it to be a pulled muscle or maybe a blood clot.

I picked up the kids from school; we visited on Friday evening and said we’d be back the following afternoon.

Midday on Saturday, April 15 2000, I got a call from someone at work; the hospital had rung there trying to get hold of me. I needed to phone them back.

One of those calls that is never forgotten. The fear was due to what they wouldn’t say, not what they would. Just come. Don’t bring the children.

Just come.

Oddly all I could think about was remembering to turn the grill off. I was cooking fish fingers at the time. I’ve never bought, cooked or eaten them since. They are off the menu. Forever.

I knew, as I made arrangements for someone to have the kids what I was going to face. I even said this as I dropped the kids off. And was told I was over reacting. “Don’t be so silly”.

The hospital staff were sympathetic, professional, thoughtful and kind. My sister had died, aged 34 of necrotising fasciitis (aka ‘the flesh eating disease’). She’d not been ill before Tuesday, died on Saturday under anaesthetic in theatre.

They had made plans to keep her in a coma for weeks had she survived to give her body a chance to recover. But in theatre she’d died. The death certificate stating septicaemia.

I called our parents, they came to the hospital. Later we all went to our separate homes. I picked up the kids and took them back to my house. And told them. Told two children aged 8 and 10 their mother was dead. Their father had left 7 years before and both had autism. Grief is different for autism. They just accused me of joking, asked ‘do we live here now?’ and then went to bed.

Home life

I get so proud of Eedy when he comes home these days. My weekly report from his care home show opposition, rebellion and down right bloody mindedness, but when he’s home we get a totally different person. Don’t get me wrong, he’s not unhappy where he lives (as far as I know), he sometimes chooses not to come home. Which actually helps me to feel he is okay where he lives.

This week we were informed of a safeguarding alert from the home relating to another resident, caused by Eedy – think of the most offensive words and insults you could throw and you wouldn’t be far wrong. But I’ve never heard Eedy swear. He’s never dropped the ‘C’ bomb to me, or even f-ed or jeff-ed. But I don’t doubt that he does!

Tonight at 8.40 he told me I was late with his tablets – those tablets that aren’t locked away, they are left on the kitchen side. I potted them up and told him what each is for. I then potted up his 10pm tablet and told him it’s ready for him to go get it when it’s time (‘cos he’s far more likely to remember it than me).

A little while later one of the dogs started getting restless. Hubby and I were sat in recliner seats, Eedy was stood rocking from side to side (as is the norm for him). Hubby looked up:

Hubby: Eedy – let the dogs out will you?
Eedy: Ok

A little while later –

Chrissie: Eedy – let the dogs back in
Eedy: Ok

All so normal – yet worlds apart from the ‘normal’ of the care home. We’ve just had a conversation about shopping tomorrow – Eedy has the choice of coming with us or stopping home alone. There is no risk (and no risk assessment). He’ll be cool. He’s 25 years of age and can use a phone if he needs to.

But in Social Care world he’s never left alone. His tablets are never left out and every prompt is translated by him as a nag. Before coming home he hadn’t washed for over 3 weeks. The area manager asked him if he bathed here. He replied ‘Chrissie wouldn’t let me come downstairs if I didn’t wash’ – not true, but happy he respects my standards! When I raised it on the way home he said ‘you can’t make me’ I replied that I neither couldn’t nor wouldn’t but, we are family so why would we engage in such fights? He didn’t have an answer. And he’ll shower tomorrow morning before I see him. Without doubt.

How social care lets down the introverted carers

It’s nothing to do with the stereotypical characteristic of ‘being British’ it’s about personalities. It’s not even about ‘not wanting to make a fuss’. It’s about patiently waiting for the professionals to do their job. Unfortunately, when the social workers are overstretched and their job becomes a continual fire-fight the introverts are left behind. The crisis has either passed, or become the norm.

I speak (well, blog) only from my own personal experience. My girl has a social worker – she’s ‘been in the system’ for the last 14 years (children and adult learning disability services) since her mother (my sister) died. Her main disabilities are due to sensory and processing differences. She’s not ‘complex care’ or ‘challenging behaviour’. No cause for alarm there then. My husband and I are both 20 years plus working and training social care staff – so we know the system.

In the last 14 years the social work team have seen my girl and me probably about 8 times. And that’s being generous. Certainly not annually – in fact she hasn’t seen a social worker for the last 4 years. There was a three year gap before that, and eighteen months before that….

It’s scary how the potential for issues to escalate is not addressed, how support is neglected unless ‘bumped’ up the list of priority (or not).

At one meeting (an emergency planning meeting for my nephew) I was read a report stating that I was demanding and the social worker reported that she was highly concerned that ‘[Mogs’] placement’ was breaking down – “not if, but when” was read out, with dour face totally unaffected by my tears of anger and disbelief.

I was read this report when my girl was 9 (some 9 months after she moved in with me) but no one had visited us in months, either before, during or after this report was written, or even in the seven months following it’s public airing…And this was not long after the horrendous death of Victoria Climbie, and the atrocious court case that followed. During this time social services talked at length about ‘lesson’s learned’. And although Mogs wasn’t (in my opinion) at any risk, her file was full of opinionated comments relating to my then husband’s mental ill health, my (alleged by them) continual financial requests (which were in fact for a kinship allowance) and ludicrously about me being seen driving around town in a brand new green car! (Of which never occurred – unless I have a double).

I’ve had numerous occasions when I’ve felt I don’t know what to do, I’ve raised concerns regarding potential serious safeguarding issues, we’ve had educational and currently have major employment issues. I’ve allowed the system to ‘put me off’. And feel we’ve become the bottom priority. Because I’ve spoken, hinted, made concerned comments and not complained, shouted or screamed. Not because I don’t think I need to, but because it’s not my way. I’m essentially an introvert.

I don’t ask for help in most areas of my life, my husband has to work out when I need support; he’s become the expert in offering. That’s the key really. Being available.

Mogs is an adult now and doesn’t want us being involved in everything. She’s her own person. But she still needs support. It’s pretty devaluing for an independent minded 23 year old to still have to run to us for her support in matters of employment seeking and benefits, but she has no choice. You see she’s an introvert too. And she hasn’t learned the effective example of ‘how to do it’ from me. The British social care system is less ‘if you don’t ask you don’t get’ and more ‘if you don’t scream loudly, make threats, link to potential safeguarding, court cases or infer cost implications then you don’t get’.

But then again, if you do scream loudly, make threats and keep shouting you’re a troublemaker, a ‘difficult’ parent or just known as a total pain in the ass who needs to be suppressed. And there is one heck of a lot of evidence out there to show the extremes the system will go to in order to suppress those that seek justice…

Bit of a lose-lose situation really.

Late night chats

I used to get hugs from Mogs when she went to bed. But they were ‘rote’ learnt hugs, you know, like hugging a plank of wood. Something she had to do. Because we’d said it was the right way to say goodnight.

Now, every now and again, I get late night talks with her. She’s pragmatic, sensible and balanced. An excellent sounding board and a bloody good listener.

Funny how things change. At the first ‘growing up’ opportunity Mogs dropped the hugs. Initially beginning with her manipulating a non-bedtime bedtime. So she could get away with it. Then the “g’night” would be sounded as she was already half way up the stairs.

Now it’s an adult “night then” on the nights we’ve spent talking. They are becoming more frequent. I love these. It means we’ve chatted, caught up and I’m the one really valuing our discussions, adult to adult. Her autism means she doesn’t overdo the words (unlike me). She listens, gives her opinion, but does not advise.

Something I need to learn more of.