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Wednesday, 20 April 2016 08:48

“Natural Causes”

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Thomas Rawnsley died on the 4th February 2015. He was 20 years old. Thomas had a diagnosis of downs syndrome and autism. He was just 4ft 10″ in height. Thomas had been in three different ATUs, leading up to his death.

Here are the words of Thomas’s mother, Paula:

Someone told me at my sons funeral that time would heal. That I would never forget him but it would get easier. I don’t want to talk about his unspeakable, cruel death he suffered alone and away from me. I don’t want to think about the horror he faced in those final hours away from me. I hurt for him and me more and more every day. I fought so hard for my boy. They were always so powerful and Thomas was special to me.

I didn’t know how I was going to cope with him when I found out he had Downs Syndrome. His father and I were so worried, no one gave us any hope or encouragement but we tried so hard alone and brought up the sweetest, mischievous, loving boy ever. He loved his three older sisters and they loved him equally. We had one great family and we struggled with all the ups and downs families have normally.

But like many children going into their teens Thomas started to be troubled. Although very slight in stature, (he was only 4ft 10) he could be very strong. He also was diagnosed at this time with autism and so trying to understand what was happening to him was hard. He didn’t want to go to school and I was under pressure to get him and the others to school. I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go.

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The journey for Thomas was a darker and terrifying descent into a land of hospitals, drugs, cruelty and abuse resulting in a ‘ carer’ targeting him deliberately and bending back his fingers to torture him among other means of torture and repression. Thomas had a will and stood up for himself despite his small size but they gradually beat him down and then they broke him and us with him the day he died in their non care. I knew he would die away from me. When he was finally sent away from us by a judge who said he “was getting bored and needed his tea’ I wept. I knew he would never come home. I knew it would be the end. I'd been secretly gagged by the court for daring to talk about the previous abuse in a local paper . I had no where to go with my problems and pleading. Thomas’s official advocate had promised to stand against the transfer to the home in Sheffield but he turned against him on the day and agreed with the courts. Thomas was bundled off sobbing and I didn’t get the chance to say good bye.

The odds were always stacked against us. The last meeting I had with the professionals there were three lawyers in the room plus senior officers. We had a volunteer with us. We were not listened to. I told them Thomas had a serious chest infection and they said it wasn’t up for discussion at that meeting. Instead they told us it was an expensive meeting so I needed to listen to the important people. They had no intention of getting any grant money on offer to get Thomas housing. They stopped the application. It would have given us some hope and my darling boy some hope. Instead he died feeling hopeless and losing his faith in anyone to help him. the professionals at the meeting refused to let the Minister of Health Norman  Lamb have information that day or the BBC who were interested in Thomas’s story. I know in my heart that if they had not gagged us again like that Thomas would be alive today as they wanted to go and get information over the next few days.

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A week later Thomas was dead. A secret trip by a senior, and in my view, vengeful local authority officer to the court resulted in me being gagged again. I was unable to get to the people who could do something to help, and that cost Thomas his life. It was under the pretext of being in his best interests that the application to silence me was made. But it was because I criticised them for failing to look after my son properly and commissioning such appalling services. But all of those in power change their stories and have no accountability.

It was snowing the week Thomas died. The home told me not to go. They didn’t tell me how ill he really was. I set out and turned back because the snow was so bad.  I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands. I have read reports now before his inquest that I can’t  share or discuss yet. But I lie here alone in my flat desperate and guilty that the horror of his death was avoidable. It’s not something that time heals. It gnaws, twists, wrenches and possesses me in an agony that is indescribable. I post pictures of some crazy nights to make people think I’m ok but the craziness is all in me. I’m going mad with the pain and guilt of it all.

My boy, my vulnerable boy died alone  without me. They immediately said it was natural causes but a lifetime of pain, separation, cocktails of drugs, sobbing to come home, pleading to see the Judge, fell on their cruel dispassionate ears and we, his family are left to tend his grave. I had to agree to turn off the life support system of the baby who I brought into this world and that I loved for every special bit of him.

Justice for my boy Thomas Rawnsley

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A Request:

Thomas’s final pre-inquest hearing is in Sheffield at 11am on the 5th May. Paula would really appreciate as much support as we can gather. If you are free on that day and are able to attend, we know that Paula would really appreciate the support.

Click here to read the original article.

Published in Blogs
Wednesday, 20 April 2016 08:24

Life For A Learning Disabled Person 2016

jack1Jack was born with ATRX syndrome, which on its own has its difficulties. He attended a special school and had no issues there at all until it was time to leave at 16.

Jack’s anxieties were heightened more and more on the transition from school to college. He only visited the college once and on starting there, he found things very difficult. By this time he was known to CLDT team and was put on antipsychotic drugs.

Jack managed 18 months of college before they eventually excluded him because they could no longer support him. The next 18 months support came under the social care umbrella where they threw all kinds of support charities at him. It was inconsistent, which is the worst type of support when you have needs like Jack’s.

He hated it and his difficulties got worse to the point where he would go into town alone (as he was encouraged by the social care team to do) and get into trouble. The social care team didn’t like this and tried hard to control his life, activities etc. The psychiatrist was shelling out the drugs but wasn’t interested in Jack as a person at all. She prescribed 3 different drugs that he had extreme effects from, which added to his anxieties.

jack3I had asked for an autism assessment since Jack left school, but it fell on deaf ears.

The events leading to Jack’s first section(2) under the Mental Health Act (please bear in mind that Jack has never been diagnosed with a mental health problem) was the professionals believed that Jack needed help. To our regret, we went along with this and left him there for 28 days.

On discharge Jack had no diagnosis (autism or mental health), no care plan or aftercare. My husband had to give up his job to support him with me. They stripped Jack of all the meds they had previously prescribed and we had to wait 8 weeks to see a psychiatrist. But by this time he was finding things even more difficult.. My husband returned to work after the 8 weeks and Jack’s behaviour became challenging again and aimed at me a lot of the time.

Social services offered a flat for Jack. There was no transition, we weren’t allowed to see it beforehand and we were given just three days to prepare Jack for the move. We dropped him off on a Sunday afternoon. We spent 2 hours cleaning what the professionals called the flat. It wasn’t a flat. It was a conservatory added on to a bungalow that housed two other residents. In the conservatory Jack had a seating area and a small kitchenette. He had a single bed in the corridor between the conservatory and the rest of the house and a bathroom at the end of the corridor. We left him with 2 guys that hardly spoke to us. That evening it was highlighted that it was the wrong place for Jack but he was kept there for a further 2 days.

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Jack was so anxious and broken in the conservatory that the psychiatrist waded in there and then and sectioned him again. He was sent to an ATU in Birmingham. We live in Gloucestershire. I was not consulted at any point but the official papers says different! Jack pleaded with them for a second chance in the conservatory, even though he hated it and was very frightened there. He didn’t get one! After being in Birmingham for 2 weeks and after a lot of history written by myself, the ATU confirmed the diagnosis of autism and ADHD. Jack responded well to treatment and now has 3 days home leave each week. He is now waiting for a care provider to produce a team of people that can support Jack to come back to Gloucestershire. Jacks section ended on 28 March 2016 but this has been renewed because of the wait for a care package to be put in place back at home. We see the section being renewed indefinately. Not because Jack needs to be under section but because the LA are making no effort in putting a care package together. They dont have to spend a single penny whilst Jack is in the ATU and we get the impression they’d like to keep it that way.

jack5The hospital are now trying to undermine our experience of Jack. We dont get any problems when Jack comes home on leave, although he gets very anxious prior to a home visit in case they cancel it. A couple of weeks ago, they cancelled Jack’s weekend home and Jack cleaned the whole ward in an attempt to get them to change their mind. Unfortunately, the Unit are now saying they don’t  believe our reports of Jack’s behaviour at home. I know from other families that this is a familiar tactic to discredit families, it still feels very threatening for Jack’s future.

Jacks time in this ATU has really affected him. The tribunals,  the reviews have all taken their toll on him. It will take a long time to forget. Their control over him and us is disgusting, they pull the strings and we jump! I’d like to add being taken from home and sectioned in two different units could all have been avoided if a diagnosis was offered to him here in the community, but he had to be sectioned to get it!

Jack’s young life has been ruined all because the professionals couldn’t be bothered to get to know him. Unresponsive. A cocktail of antipsychotic drugs. No wonder he doesn’t know what day of the week it is

Jack hasn’t lived yet. He hasn’t had a friend and feels very unsafe at the moment.

Click here to read the original article.

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Published in Blogs
Wednesday, 20 April 2016 08:08

“Mum. I Can’t Get The Words Out”

edenThe first post tells the story of Eden Norris. We chose this story to begin the seven days of action because Eden has been in ATUs for the last seven years of his life. This is way beyond the national average for time spent in ATUs.

Eden is 24. He has a moderate learning disability and autism.

Eden has been in 2 units. Eden was admitted to the first unit aged 17 and remained there for 5 years and 4 months. It was an adult medium forensic unit – which the family didn’t realise until after he had gone there. He had no criminal history. His parents agreed to him going there for an assessment as things had reached crisis point due to lack of the right support. Though Eden was admitted as a voluntary patient he was later sectioned under the Mental Health Act (section 37) following staff pressing charges after episodes of challenging behaviour. The episodes of challenging behaviour were often caused by things like staff locking his toys away.  Eden was overmedicated and secluded for long periods of time. He put on 16 stone while he was there. For most of his years in this Unit, Eden was kept all day long in a single room. The room had no toilet facilities, so inevitably, Eden repeatedly soiled himself. He was fed through a hatch in the door. He very seldom had face to face, one to one contact with the staff.

Eden has been in a second unit since January 2015. This is many miles away from home. It is a remote location, 15 miles from the nearest town. It is a 13-hour round trip for his mum to visit him. Eden was allocated a shack in the woods for his sleeping quarters. He loves swimming but hasn’t been since being in this Unit. The nearest pool is many miles away and there is never enough staff employed on a shift to support Eden to swimming. Most of his day is spent either in his room or taking long walks in the Unit grounds.

Eden had an Improving Lives Team review in February 2015. Everyone was clear that discharge planning should start and an appropriate package of support be developed in the community. The commissioner from his home area met with the family and said they would start planning. However, 13 months on, no steps have been taken to do this and there is no discharge date. Eden ’s parents have made formal complaints about his care but nothing has been done.

Eden’s mum has done a huge amount of work to explore and approach housing and support providers locally and involve experts to help design a potential package of housing and support (these include the Housing and Support Alliance, Dimensions, My Safe Home, Yarrow Housing). She has found providers that would be willing to develop and provide a package for Eden if Hammersmith & Fulham LA give the go ahead. She has given all the details to the commissioner at H&F. They do not appear to have done anything with this information.

At the CPA meeting in September 2015 – no proper steps had been taken by H&F in relation to discharge planning. In the last year they have had 3 meetings with the commissioner where they have discussed the research Eden ’s mum has done. They went through budgets, talked about type of accommodation. But nothing has been taken forward, despite promises.

babyWhen Eden first moved to the current unit, staff communicated with him via a hatch. This was because of information passed on by the psychiatrist at the previous unit. Soon after, the current unit realised how wrong and misleading this information had been about Eden. And one of the staff said ‘he shouldn’t be here’.

He should never have gone to the medium forensic unit. He had been living in residential care from the age of 15. The family were struggling to cope due to lack of support from H&F. But he had been doing very little at the residential care placement – he was really bored. He came home for visits, where he would do things with his family. His mum remembers he had been out in the garden at home on the trampoline, playing swingball and going to a Nepalese restaurant a couple of months before he ended up in the unit. He had been so bored at the care home.  There had just been a little supermarket nearby. There was nothing to do. There were activities and things to do in the nearby town but it was a 2 mile walk away – there was no transport due to lack of funding – so Eden was hardly ever able to access activities. It was no surprise that things got to a crisis point.

Eden is someone who can talk and say how he feels and what he thinks. But what his family have seen over the last few months is very concerning. It appears that everything is being done to stop Eden having a voice. Eden ’s mum thinks this could be a response to her trying to get help with Eden ’s case and making complaints to move things forward. Several months ago the hospital did everything they could to block the relationship between Eden and his mum’s partner, who Eden talks to and opens up to. They tried to shut this relationship down by saying he was not the biological father so couldn’t ring.

Soon after the September 2015 CPA meeting, Eden’s mum was not allowed to speak to Eden for 10 days. She phoned but was told that Eden did not want to speak to her. This was very out of character. Following this, she heard that Eden had hit out at 3 people in the unit. He had not had any incidents for 2.5 years. His family think the distress of not speaking to his mum could have triggered this behaviour and are worried that this could now be given as a reason why Eden shouldn’t be discharged. The protocol about phoning has changed. His mum is now told that they can not phone him. They can phone and then staff will ask Eden if he wants to speak to them, or Eden can phone them when he wants to. When his mum visits and they get some precious time alone – she supports him to phone his sister and his Gran and he loves speaking to them. He needs support to speak to those he loves. The unit should be facilitating contact with his family and prompting him.

The consequence is he is speaking much less to his family. He is naturally a lively boy but he has become monosyllabic. His medication has also been increased. When mum does speak the call is on loudspeaker. His speaking is slurred because of the drugs. He has said ‘mum I can’t get the words out’ because his face is paralysed as a side effect of the drug. The drugs are also shutting his thinking down, which makes it hard for him to make choices and ask. It is very concerning. The unit are using phrases like it is in his best interests, his choice etc. His mum is watching him sink into himself.

His mum is also concerned he is not getting enough to drink. He used to ask for a drink  frequently but he doesn’t now. It is important he drinks enough water being on so much medication. His mum has raised concerns about this. Being on the drug shuts his thinking down and may mean he doesn’t ask for a drink.

swimHis medication had been reduced to 200 mg of Clopixol per week, but it has been put up to 300 mg per week. (Note: Clopixol is an antipsychotic but Eden does not have a psychotic disorder). Eden told his mum that his medication had gone up, the unit didn’t inform her about this. Being on less medication meant Eden was talking more. His family fear his medication has been put up to try and keep Eden quiet.

Timing wise his mum realises his medication was put up on 25th Nov, a couple of days after the communication that, an old family friend, Rev. Rudi had sent about Eden ’s experience in units. Eden ’s mum thinks this could be a direct response and part of the hospital shutting things down – overmedicating Eden and reducing phone contact with the family. Following the communication from Rudi, a social worker from safeguarding in Norfolk contacted Eden ’s mum about the Facebook petition they have for Eden – asking them to take it down. The family keep being put in the position where there is no action to move things forward – and when they do speak out – the hospital closes communication channels, and she gets calls from professionals, which have a very controlling, threatening feel – and make Eden ’s mum fear things could get worse for Eden .

In the Improving Lives review in March 2015 – Eden is quoted in it: ‘I don’t want to live here, I would give it one out of ten. I like looking after animals best. I want to live in London near my mum’. He loves the Shepherd’s Bush area. He grew up using the parks in London .

Eden’s mum was told a while ago that it might be unlikely Eden could come and live back in the family home (as it would need adaptations and it might be complicated to make this happen). So Eden ’s mum gently started talking about ‘a house near mum’ to help get Eden used to the idea of being in his own house but still near his mum. Eden got used to this and the language moved from ‘living with mum’ to ‘living in his own house near mum’. Eden has suddenly been asked a lot about where he wants to live. This is a new question and has been confusing for Eden. He has always said he wants to live with or near his mum. H&F seem to be actively encouraging Eden to be eventually discharged to Norfolk . They do not seem to want to arrange the care package for Eden and the ongoing responsibility for Eden in H&F. There are some real concerns about what is going on and how the law is being used.

In the meantime, Eden will shortly be entering his eighth year, away from his home and family.

Seven Days of ATU Action need your help in getting Eden the home he so deserves after seven years away from his family.

Click here to read the original article.

Published in Blogs

I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate) 
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.

The children were all born, over a period of 5 years however with them all they always seemed to be ill, were never reaching milestones, had delayed speech etc.

Laurens 1st bath - weighing3lb

Laurens 1st bath – weighing3lb

I was convinced something wasn’t right. It didn’t seem right that all my babies were showing signs of illness, delayed milestones etc. When I was pregnant with my 1st daughter my mum passed away very suddenly aged 42. I was devastated by this and was very quickly diagnosed with depression. Having lost my mum the GPs, Health Visitors etc thought I was being paranoid, over protective mum when I would voice my concerns over the kids. I was always being reassured the children were fine and they would catch up.

My family x x x x

My family x x x x

One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;

 

• Facial Dysmorphic Features
• Cerebral Palsy
• Incontinence
• Valgus Foot
• Hypermobility
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Athsma
• Noise Intolerance
• Deafness and more

In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)

Published in Resources
Thursday, 18 February 2016 19:00

The invisible link between Autism and Anorexia

 

 

Louise Harrington was starting to doubt that she had anorexia. She knew she was shockingly underweight, and she desperately wanted to gain at least 30 pounds. She had no desire to look like a model. She had no phobia of fatness. She wasn’t afraid to gain weight. She didn’t have any of the typical body image worries that overwhelm many people with anorexia.

Instead, what trapped Louise in a haze of malnutrition and compulsive exercise for more than 30 years was that eating too little and exercising too much blunted the feelings of overwhelming anxiety that threatened to drown her. (Louise asked that we not use her real name.)

The psychologists and psychiatrists she visited couldn’t comprehend what was driving her behavior. When she was in her 20s, one doctor told her she couldn’t have an eating disorder because she didn’t have a fear of fatness. Other therapists said she was either lying or in serious denial. The assumption that her anorexia was necessarily driven by a desire to be thin further frustrated and alienated her, so she stopped trying to get help.

It wasn’t until she turned 40 and she was fainting regularly at work, and was in and out of the hospital with malnutrition, that Louise tried, once again, to get psychological help. For the first time, a psychiatrist connected Louise’s longstanding social difficulties with her rituals around eating, and brought up a possibility that no one had never mentioned: autism. She was diagnosed with autism shortly thereafter.

“The diagnosis has helped me to understand why I struggle so much with life,” Louise said in an email interview, her preferred form of communication. It also helped her understand her eating disorder, which functioned not as a way to lose weight but rather to feel in control of her anxiety and the world in general. In fact, if it were possible to under-eat and over-exercise without losing weight, she says, she would do it. The only thing Louise seemed to have in common with others who have anorexia was near-stratospheric levels of anxiety.

On the surface, autism and anorexia couldn’t seem more different. People with autism are supposedly not attuned to the emotions of others, whereas people with anorexia are commonly thought of as oversensitive young girls hell-bent on fulfilling cultural ideals of thinness. But strip off the misconceptions, and the two conditions are far more similar than anyone believed, says Janet Treasure, a psychiatrist at King’s College London and director of the eating disorders program at Maudsley Hospital in London.

“I must admit I was skeptical at first when I read about the links,” Treasure says, “but when we were looking at various aspects of vulnerability to anorexia, such as thinking styles and emotional styles, they were actually very similar.”

Emerging research shows that people with either condition have difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the big picture. What’s more, both groups of people often crave rules, routines and rituals. Genetic studies also suggest overlaps between autism and anorexia.

Anorexia is not the only eating disorder connected to autism. Although the majority of research on eating disorders in autism has been focused on people who routinely eat too little food, some women with autism may also turn to food for comfort.

Some estimates hold that as much as 20 percent of people with enduring eating disorders have autism. Because girls with autism are frequently underdiagnosed, it’s often an eating disorder that first brings them to clinical attention — although men and boys with autism can and do develop eating disorders, most of the research and clinical attention has focused on girls and women. This gender bias has led some to refer to anorexia as ‘the female Asperger’s.’

Recognizing that someone has both autism and an eating disorder is only the first step. Few psychologists have expertise in helping people who have both conditions. Historically, eating disorder treatment mandates group therapy, but people with autism often have difficulties with social interactions. This treatment also requires that the individuals make dramatic changes in their eating routines, often in a short period of time. But some people with autism find it challenging to meet this demand because of their insistence on sameness. As a result, many people who have both autism and anorexia find it difficult to recover from their eating problems, and are less likely to recover than those who have anorexia alone. Louise and others like her are demonstrating that although the overlap between autism and anorexia is more common than anyone realized, there are still few effective treatments for this dual burden.

A familiar pattern:

To explain anorexia, psychologists often point fingers at modern Western culture and its emphasis on an excessively thin female body. But skeptics point out that if this were true, the prevalence of anorexia would be a lot higher than 1 in about 100 people, which is what it is today in the U.S. and other Western countries. Early genetic studies in the 1990s showed that anorexia is strongly heritable and tends to run in families. Others began to link anorexia to personality traits such as anxiety, perfectionism and a tendency to get stuck on certain thoughts or ideas.

In the early 2000s, psychologist Nancy Zucker, who runs the eating disorders program at Duke University in Durham, North Carolina, wanted to better understand some of the social and cognitive difficulties many of her patients experience, in order to provide better treatment.

 

As she began to search the literature, she came across some studies on autism and was struck by the similarities between the cognitive profiles of the two conditions. In particular, she noticed that people with anorexia struggle to recognize the impact of their behavior on others. “They can be very empathic and have a great desire to be accepted by other people, but they also seem a bit impervious to how their starvation affects others,” she says. In that sense, she says, people with anorexia seem a lot like those with autism.

Zucker wasn’t the first scientist to make this connection. The first study on the two conditions was a 1980 case report of a young girl with ‘atypical’ anorexia and autism. Three years later, Swedish psychologist Christopher Gillbergpublished a British Journal of Psychiatry paper that hypothesized a link betweenautism and anorexia. Over the next 20 years, the field languished. But in the mid-2000s, Treasure, Zucker and other scientists picked up on this trail.

In 2007, Zucker and her colleagues outlined the potential links between autism and anorexia in a 31-page review article that revealed just how similar the two conditions can be. People with anorexia often have difficulties making friends and sustaining social relationships even before the onset of their condition. Because high levels of social discomfort and withdrawal persist even after they begin eating regularly and return to a normal weight, these social difficulties are not likely to have been caused by anorexia or malnutrition. The review pointed to numerous studies of people with anorexia that documented rigid patterns of thinking and behavior, an insistence on sameness and difficulty with change — all of which are commonly seen in people with autism. Lastly, neurocognitive studies showed that people with anorexia have trouble with what Treasure calls “seeing the forest for the trees,” and also with mentally switching between different tasks. These traits, the researchers pointed out, are also seen in people with autism.

A year later, Treasure’s group in London demonstrated that women with anorexia score significantly higher on the Autism Spectrum Quotient, a self-report questionnaire that measures autism traits, than controls do. A 2014 study in Molecular Autism found that although only 4 percent of the 150 girls receiving outpatient treatment for anorexia at a London clinic had possible or probable autism spectrum disorder, one in four scored above the cutoff for autism on a screening questionnaire. This finding suggested that the girls had high levels of autism traits, even if they did not have a clinical diagnosis. A separate study in 2012, also by Treasure’s group, found that the starvation brought about by anorexia exacerbates the autism traits clinicians and researchers see. Even after recovery, they found, women with anorexia continue to struggle in social situations and with cognitive skills, although not as much as when they are acutely ill.

“They were also incredibly rigid and inflexible, and there’s the idea that, perhaps, that part of the autism syndrome might be a particular risk factor for developing a restrictive eating disorder,” says William Mandy, a psychologist at University College London who was involved in some of these studies.

Mandy’s background is in autism, not eating disorders, and he wanted to investigate these links more fully. In 2015 he conducted lengthy interviews with 10 women who have eating disorders whose charts had been flagged for social difficulties or possible autism. He found that all of them had issues with social interactions and food that long predated their eating disorder.

Also in 2015, a large Danish study found that close relatives of people with anorexia have significantly higher levels of autism and related diagnoses than would be expected by chance, suggesting that the two conditions share genetic and neurobiological links.

Food for thought:

Highly restrictive diets are common among people with autism. Louise says that as a toddler, she wouldn’t eat anything but boiled eggs and bread with warm milk. At home, that wasn’t a problem, but when she started primary school at age 4 and was required to eat the school’s hot lunch, she refused. “These meals were so revolting to me that I developed a phobia of eating them,” Louise says. She also found it stressful to eat in front of her classmates. “I would go the entire school day without food.”

Zoe, a 22-year-old being treated for autism and anorexia as an inpatient outside London, had a similarly limited roster of foods. “When my mum served spaghetti Bolognese, I had her put the pasta in one bowl and the sauce in a separate bowl,” she says. She still can’t bring herself to eat anything with a sauce. (Several women in this story are identified only by first name in order to protect their privacy.)

Like many girls on the spectrum, Zoe and Louise had both coped okay through primary school, where friendships and play were more structured and social situations relatively simple. To camouflage their differences, they practiced and copied the mannerisms and gestures of other girls to navigate tricky social interactions. But as they got older, social demands increased, making them feel alienated and anxious.

“The other girls just seemed to know how to talk to people. And I didn’t. But I found if I stopped eating or made myself sick, I could at least be thin like them,” Zoe says.

Mandy says girls like Zoe may find that controlling food and weight is a way to either fit in with their peers or to alleviate their overwhelming social anxiety. When Zoe started starving herself, it made the anxiety seem less important and helped it pass more quickly, two key aspects of what psychologists call emotion regulation.

“It’s a chain effect,” says Mandy. “You’ve got autistic traits that are being untreated and unsupported that, by adolescence, are beginning to impact upon the well-being of a girl. One possible response to that, especially in adolescence, is to then start controlling food intake and weight.”

When a brain is starving, it is so focused on finding food that other emotions can seem less important. Physiologically, starvation decreases serotonin levels in the brain. Anorexia researcher Walter Kaye at the University of California, San Diego hypothesizes that people vulnerable to anorexia have an excess of serotonin in their brains that leaves them feeling continually anxious and uncomfortable. Starvation may alleviate this state.

Even positive traits that girls with autism may have, such as a strong will and dogged determination, can be hijacked to fuel a burgeoning eating disorder. “If you’re someone who’s very determined, who sets your mind on something and doesn’t budge from your cause, that can play into it when dieting trips over into something more sinister,” Mandy says.

And some people use food in a different way — overindulging rather than starving themselves — to suit the same emotional needs. Elizabeth, a 44-year-old living near Chicago, gained more than 100 pounds as a teen and young adult. She over-ate to quell the anxiety fostered by her difficulties with social cues, both at school and with her abusive family. As she got older, her quest to lose the weight and improve her health sent her spiraling into anorexia. “It was all about routine and ritual. Either I ate all the time because that was just what I did, or I didn’t eat and I exercised all the time,” she says.

Autism “might be a particular risk factor for developing a restrictive eating disorder.” William Mandy, University College London

Road to recovery:

It’s only over the past 5 to 10 years that researchers and clinicians have begun to recognize the overlap between autism and anorexia, so no one has yet been able to say with any precision how many people are affected. Jennifer Wildes, who directs the University of Pittsburgh’s Center for Overcoming Problem Eating, says the number of people with both autism and anorexia is likely to be small.

Although many of the people she sees in her practice do have difficulties making friends and meeting new people, these problems generally improve with recovery, she says, leading her to believe that the difficulties are caused by anorexia rather than autism. Wildes has seen thousands of people over the years, and says only a handful also had autism. “I really don’t think that having autism and anorexia is really all that common,” she says.

Zucker and Mandy also say the number of people with anorexia and diagnosed with autism is relatively small — somewhere between 5 and 10 percent of those who have anorexia. However, they point out, even in the absence of diagnoses, the level of autism traits, such as difficulty making friends and interpreting social cues, in people with anorexia is high — enough to affect a person’s chances of recovery.

In any case, little is known about how to treat the subgroup of people who have both conditions. Louise found that many of the psychologists she saw became frustrated and angry with her anxiety-induced meltdowns and inability to change. Believing herself defective and unable to make progress with her eating and exercise, she stopped treatment. It wasn’t until she found the psychiatrist who didn’t pigeonhole her into what’s known about anorexia that she was able to start the long process of breaking free from self-starvation.

Taking into account the distinct needs and characteristics of people with autism is key, says Craig Johnson, clinical director of the Eating Recovery Center in Denver. At their inpatient and residential facilities, for example, psychologists often protect children and adolescents with autism or other developmental difficulties by separating them from older, more chronically ill patients because their emotional and social maturity may lag behind their intellectual ability and age, Johnson says. The clinicians also rely less on group therapy for these children, emphasizing individual therapy instead.

“We always had this subset of patients who didn’t do very well in group therapy, and our response was, ‘Well, let’s put them in more groups,’” he says. “It just alienated them even more; now we know better.” Providing a small range of food choices, as well as clarifying rules and expectations, also tends to help people with autism and eating disorders recover successfully, he says.

When the treatment doesn’t account for the presence of autism, it can potentially be harmful. For example, a genderqueer 26-year-old from Atlanta who goes by the name Rabbit was hospitalized in 2013 for an eating disorder. When at home, the physical repetition of fidgeting with keychains, hand-flapping or doing sit-ups had helped to slow down Rabbit’s thoughts and ease anxiety; self-induced vomiting also had given Rabbit an ‘empty’ feeling, devoid of emotion. Rabbit knew that the vomiting, along with exercising excessively and not eating, was harmful, but that didn’t make it easier to stop. The bathroom doors at the hospital were locked, and the hospital staff confiscated Rabbit’s beads and other sensory stimulation toys, leaving no good way for Rabbit to cope with strong emotions. Instead of providing empathy and support, they treated Rabbit as defective or naughty, which only amplified Rabbit’s fear and frustration. “The only way I could find to cope was to run over my foot repeatedly with my wheelchair until I did quite a bit of damage,” Rabbit says.

New insight:

How well someone recovers can vary with age. Adolescents who have both autism and anorexia are just as likely to recover as those with anorexia alone, according to a 2015 Swedish study, although they are more likely to struggle with ongoing psychiatric difficulties.  Conversely, adults with autism and anorexia are significantly less likely to recover — perhaps, as Treasure points out, because their anorexic behaviors have become so ingrained.

Still, even if the information comes later in life, it can be valuable. Holly, 41, was diagnosed with autism roughly two years ago after a lifelong struggle with anorexia. Like Louise and Zoe, the Illinois-based mother of two was fussy about food as a child and, as a result, markedly underweight. As a child, she found that skipped meals brought her a sense of calm and control.

“It wasn’t until I got to middle school or high school that I had the cognitive development to understand that I could bring this state on deliberately,” Holly says. It was as a teenager that she began regularly skipping meals.

When a friend read a book by Temple Grandin, the well-known scientist with autism, she recognized similarities between Holly and Grandin. So Holly began to investigate, and her discovery that she, too, had autism changed her life. She had spent the past several years in therapy gaining and losing the same few pounds and never really making progress. After her diagnosis, she and her therapist worked together to help Holly tackle her eating disorder using a new approach. Instead of focusing on increasing the variety of foods she ate, they agreed to have her increase the amount of the food she did eat. They also reviewed their plan, point by point, at the beginning and end of each session. As a result, Holly began to gain weight and, just as importantly, not lose it later.

It wasn’t an entirely positive experience. Being labeled with autism left Holly with a profound sense of grief; she says it felt as though her lifelong efforts to be “normal” had failed. She is also angry that eating disorders are viewed as a quest for thinness rather than potential signs of deeper issues around food and social interactions. “Everyone just wrote off my quirks as ‘Holly being Holly,’ and I think all those years of starving myself have really changed my brain,” she says.

Still, the knowledge had an impact that went beyond her own life. As she went through the autism assessment, she recognized many traits in her then-10-year-old son. He, too, was later diagnosed with autism. Around this time, he also developed many of the habits that Holly had had as a child, such as picking at his food and eating only a few bites before declaring he was full. As a result, his previously robust frame shrank to skin and bone.

“I had to use what I had learned to help him learn to eat regularly even if he didn’t feel hungry or got full. I taught him how to read labels to make sure what he was picking had enough calories. It took a year, but now he’s back to growing as he should be,” Holly says. “No one ever did this for me.”

For that, and for finally having the tools to understand herself, she is grateful. “Without that diagnosis, I wouldn’t be where I am today,” she says.

Louise, too, is ultimately grateful for her diagnosis because it proved that she wasn’t defective, just different. It also helped her understand why her eating and exercise rituals were so hard to break. Instead of completely eliminating these routines, she worked to develop new ones that would enable her to reach a healthy weight, which she did last year for the first time in 40 years. Life remains difficult for Louise, due in large part to her autism and severe anxiety. But the eating disorder she once had, at least, is no longer part of the problem.

 
Published in Resources
Monday, 08 February 2016 10:59

Salim Razak

Hi, my name is Salim and I work as a Consultant Psychiatrist in a Community Team for people with learning disabilities. I have lots of experience in supporting people with learning disabilities, autism spectrum conditions and other neurodevelopmental conditions such as Aspergers syndrome and ADHD. Some of the people who I support have issues with their mental health, such as depression, bipolar disorder, schizophrenia, dementia etc, some may have issues with their physical health such as epilepsy and some people may have behaviour that others find to challenging to support them with. Some of the people that I work with have spent time in hospital and some people may have been arrested or had to go to Court. As well as giving advice around health, my work also involves giving medicolegal advice to Courts or to hospitals around the use of the Mental Health Act and Mental Capacity Act and Deprivation of Liberty Safeguards (DOLs).
 
Sadly, it is still the case that people with learning disabilities continue to experience inequalities in health and a disproportionate number of people are detained in mental health units. I am a passionate advocate for peoples health and rights and believe that we must all challenge these injustices.
Published in Biographies
Thursday, 04 February 2016 14:52

Care and Treatment Reviews

Care and Treatment Reviews (CTR) have been developed as part of NHS England’s commitment to transforming the services for people with learning disabilities and/ or autism who display behaviour that challenges, including those with a mental health condition.

The CTR ensures that individuals get the right care, in the right place that meets their needs, and they are involved in any decisions about their care.

NHS England has published final CTR policy and guidance (CTR policy and guidance in easy read also available) that outlines what a CTR is, the required standards, and how they should be done, along with a toolkit for commissioners and easy read leaflets for people with learning disabilities and/or autism, and their families or carers.

Read the full story on the NHS England website (opens in new window)

Published in Resources
Tuesday, 05 January 2016 17:38

Autism and Intensive Interaction

Autism and Intensive Interaction - A new training DVD from Phoebe Caldwell (clip) - link to YouTube video

Published in Resources
Tuesday, 05 January 2016 17:33

Speaking for my teen and adult children

A couple of weeks ago, the website called The Mighty,published a since-removed post called meltdown bingo.  The post was a pejorative “game” aimed to make light of children and adults experiencing sensory and emotional overload resulting in a meltdown. As some of my acquaintances pointed out, having a meltdown is not enjoyable for the person having the meltdown.  As a parent who has watched children go through meltdowns, it is also no fun for the family around a person having a meltdown.  Heck, I’ve had meltdowns myself, and they are no fun for me either (although I have more ability to temper my behavior than my kids do).

Since that time, the disability community has issued a sharp rebuke to The Mighty, with#CrippingtheMighty.  The Mighty is run by non-disabled people, is rich in inspiration porn, and contains an inordinate amount of material submitted by people who purport to speak for us.  Nothing about us without us is clearly not a principle held by The Mighty.  A number of blogs and posts have surfaced from disabled people issuing a rebuke to parents of disabled children for speaking for their children.  A number of blogs and posts have surfaced from parents claiming they must speak for their children.  Missing from these posts is the perspective of disabled parents who have disabled children.

READ FULL STORY ON THE DISABILITY PRIDE WEBSITE

Published in Resources
Tuesday, 17 November 2015 19:07

Anna Feeley

I have 17 years’ experience of supporting people with learning disabilities, older people and people with mental health problems, working both within private and statutory organisations.  I am a highly motivated, strongminded person with recognised work experience within and around successful corporate structures and an excellent blend of qualifications. I have vast knowledge of Person- Centred practices and have worked to create Person -Centred teams using team planning and training.  I have skills in graphic facilitation and have designed and delivered training to professionals from both statutory and voluntary organisations.  In my current role I am involved in the development and creation of a registered housing association, incorporating a  person -centred ethos in tenant support.

I can help you with supported housing advice, personalised care, services for people who challenge services, staff training, person centred planning.

Published in Biographies
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