Grieving the Person I Was Before Chronic Illness – Rheumatoid Arthritis

Sitting at the end of my bed, it suddenly thumps me across the chest like a ton of bricks. My lip trembles, I can feel the lump in my throat and I have to stop myself before the tears flow. I’m struggling to put on my socks and quickly I’m reminded that my life is not and never will be what it used to be. It took me a while to grieve the loss of my former self, then even longer to realize that was what I was doing. Grieving.

And just like grief, no matter how much time helps you heal, you are never truly done grieving. I have lost loved ones over the years, people very special to me, and I think about them every day. Now that years have passed, it doesn’t hurt as much to remember them, to think about them and the beautiful memories I shared with them. Still, I am sometimes caught off-guard. I’ll see my nana’s favorite sweets in the shop and go to pick them up, and then it strikes me like a lightning bolt. My nana is not here anymore. That’s when it aches the most — when just for a tiny second you forget that loss.

It is a similar process with my condition. Now that I have dealt with it for nearly 10 years, it has become easier to accept my limitations, but every once in a while I long for what I had. I forget I have limitations and as soon as I remember the things I can’t do… That ‘s when the lump hits my throat and my eyes water because it’s that very real and raw pain all over again. It’s the first time hearing the news, it’s the hurt and the confusion all once more and it’s heartbreaking.

It is a different kind of grief. It almost feels like a selfish one but it is there and I think most people with chronic illness face it. We go through the stages of grief – denial, anger, bargaining, depression and acceptance — but it tends to be a never-ending cycle, just as illness is.

All stages occur in quick succession: you deny your illness, pushing yourself to your absolute limit, and then you feel such anger when you struggle to keep up with the others or perform simple tasks. Next comes the bargaining: if I just got healthier, exercised more, ate less crap, meditated more…. But no matter what you do, your illnesses won’t be gone. The realization of that brings on the depression, not feeling good enough, feeling useless and helpless until finally and thankfully you make it full circle to acceptance again. Each time I go through the cycle, I make it to acceptance more quickly and it lasts longer. This is not to say I am happy with my illness, but I’m fine with it. It is part of me now and, for the most part, I accept that — the same way that while I miss my grandmother with all my heart, I have come to terms with her loss.

When I think of my grandmother and how much I miss her, I also think of how happy I was to know her in the first place, to have been loved by her and have wonderful memories no one can take away from me. When I think of my rheumatoid arthritis, I have to see the positives in it, too. I have more than I have lost. My illness has changed me, but it has not reduced me. It has made me more empathic to others, made me stronger, made me a fighter and most importantly, it has shown me just how much my family and friends love me.

Sometimes I will grieve my old body and grieve the normal, pain-free life I could have had. But for the most part, I will be out there making the most of what I have got — which, thinking about it, is more than enough.



Autistic Teenager kicked out of college After one week after admission error

James Parker said he feels like he’s been “thrown in the bin” after tutors handed his mum a letter on Friday saying they had made an mistake and he should find somewhere else to study.

 James Parker and his mum Emma were handed the heartbreaking letter on Friday

James Parker and his mum Emma were handed the heartbreaking letter on Friday

 James,. 16, pictured after his first day at college last week

James,. 16, pictured after his first day at college last week

The 16-year-old, from Norwich, had been accepted after an interview and started lessons last Monday.

But the letter stated a ‘consultation’ carried out over the summer holidays had ruled the college is ‘unable to provide the support required for James to have a successful year’.

Mum Emma, 40, a full-time carer, said being accepted on a pathways course had been a ‘lifeline’ for her son and the blunder has left his dreams shattered.

The mum-of-two told Sun Online: “My heart is broken for him.

“I’ve never seen him as happy as he was last week. He said it had been the best week of his life and even said ‘mum I could cry happy tears’.

“I arrived at the college on Friday to pick him up and was given the letter. We were both basically told ‘don’t come back’.

“James has been distraught ever since, in floods of tears and just not wanting to face the world.

“He told me he doesn’t want to try at anything ever again now. It could have been the making of him but he’s had it snatched away in the cruellest way possible.

“Mistakes can happen but the whole situation’s been handled terribly and the way it impact’s on James’ live is just horrible to see.

“The way his emotions work he is very vulnerable but he’s been treated as an afterthought. As a parent it gets you so angry – how dare they do this to him?”

James said: “I loved it when I started last week. It felt so natural, like a perfect fit, and I was excited to start my classes.

“Now I feel like I’ve been thrown in the bin.”

 City College Norwich said it made an error allowing James to enrol

City College Norwich said it made an error allowing James to enrol

James had studied at a specialist school for autistic pupils before leaving at the end of Year 11.

City College Norwich is a mainstream college which also caters for students with special educational needs.

The letter from the college reads: “Unfortunately, James has been enrolled in error at City College Norwich. Although an interview took place at the college, the tutor was unaware of a consultation which had taken place prior to the interview.

“Norfolk County Council should have informed you of the outcome of this consultation, which was that the college was unable to provide the support required to James to have a successful year.

“The council should then have worked with you to find a suitable placement for James. Unfortunately, this process did not take place and James was enrolled in error on Monday 4th September.

“We apologise that this error has taken place and we ask you not to send James back to college but would like to wish James all the very best for the future.”

A City College Norwich spokesman said: “It is deeply regrettable that a young man with high support needs found himself in the position of having started college, only for his place to be subsequently withdrawn.

“As we are unable to meet James’s support needs this should not have happened and we offer our unreserved apologies to James and his family for the distress this has caused.

“In March this year we conveyed our decision to Norfolk County Council that James needed a higher level of support and a different learning environment from that which the college is able to provide.

“Notwithstanding the family’s right to appeal that decision, this should have led to alternative provision being sought that could better meet James’s identified needs.

“However, a separate application for James was made direct to the college in July, effectively bypassing the EHCP consultation process.

“On the basis of the information that was available to our staff at the time, this led to a place being offered to James which was conditional on the right support and funding being available.

“We are clear that this very unfortunate and isolated incident should not have happened. We are now reviewing our application processes to make sure that something like this cannot happen again.”

Norfolk County Council said it had made repeated attempts to contact James’ family but would now try and find him an alternative place to study.

A spokesman said: “We are very disappointed that this situation has come about because we have made repeated attempts over several months to speak to the family about James’s future.

“We remain very keen to work with James and his family to secure the best possible outcome for his education and urge them to respond to our offers of a meeting as soon as possible to talk through the options.”


Autistic boy, nine, is attacked by a gang of bullies who nail a plank of wood into his HEAD

A gang of bullies nailed a plank of wood into the head of an autistic boy as he walked home from visiting his grandmother.

Romeo Smith, nine, from Ma nsfield, was approached by the group who were waving sticks and calling him cruel names he climbed a tree to try and escape.

But when he tried to make his way home one of the yobs threw a plank of wood at him with a large nail protruding.

The piece of wood hit the youngster at the back of his head and the nail embedded itself into his skull.

Romeo Smith, nine, from Mansfield, was approached by the group who were waving sticks and calling him cruel names he climbed a tree to try and escape

Romeo was taken to Manfield King's Mill Hospital where doctors gave him morphine and removed the nail which had bent as it hit his skull

Romeo was taken to Manfield King’s Mill Hospital where doctors gave him morphine and removed the nail which had bent as it hit his skull

Romeo Smith, with his mother Natasha Smith, from Mansfield. Romeo had a nail stuck in his head after bullies attacked him on a walk home

Romeo Smith, with his mother Natasha Smith, from Mansfield. Romeo had a nail stuck in his head after bullies attacked him on a walk home

Mother Natasha, 30, a nurse, had been walking home with Romeo and her three other children after calling at her mother’s house nearby when Romeo was targeted.

‘Romeo had lagged slightly behind,’ said Natasha at the family home in Mansfield, Notts.

‘It’s usual for him to trail behind me a bit, he does it a lot because of his autism and it’s something I’m used to him doing.

‘He likes to stop and look at things. So I was ahead of him slightly.’

When she got home Natasha realised Romeo wasn’t behind her so his father Craig, 35, immediately went to check on him.

He found the Chelsea fan minutes away from the family’s home, trapped in a tree by three boys who were brandishing sticks and were calling him cruel names and taunts.

As his dad approached Romeo came down but as the pair walked away one of the boys picked up a plank of wood which had a nail attached to it and threw it at the youngster.

Romeo was rushed to hospital by his terrified parents after they realised the rusty nail, which was covered in bugs, had lodged into the back of his head

When she got home Natasha realised Romeo wasn't behind her so his father Craig, 35, immediately went to check on him

When she got home Natasha realised Romeo wasn’t behind her so his father Craig, 35, immediately went to check on him

He found Romeo minutes away from the family's home, trapped in a tree by three boys who were brandishing sticks and were calling him cruel names and taunts

He found Romeo minutes away from the family’s home, trapped in a tree by three boys who were brandishing sticks and were calling him cruel names and taunts

A one inch section of the nail embedded itself in the back of Romeo’s head with the wood still attached. His dad carried him home and Natasha decided it was too dangerous to remove it on case it caused further injuries.

Romeo was taken to Manfield King’s Mill Hospital where doctors gave him morphine and removed the nail which had bent as it hit his skull.

Natasha added: ‘My partner was terrified, and I was so upset but Romeo has been so brave. He is a very lucky little boy because it could have been more serious.

The 8inch-long plank of wood which was stuck in Romeo's head after the attack

The 8inch-long plank of wood which was stuck in Romeo’s head after the attack

He has been given some antibiotics because the nail was so dirty, it was covered in bugs. The doctors were really amazing and he seems fine now but it was a horrible thing to happen.

‘I don’t know whether it had anything to do with his autism, but I think they did see him as vulnerable.

‘If I could speak to the boys responsible I would tell them to stop bullying others.I would tell them to stop the name calling and the violence. I don’t want this to happen to another child.’



Male Dominance In Autism Because Our Assessments Are So Male-centered

There is a long-held myth that autism is a predominantly male phenomenon – that boys are far more genetically or biologically predisposed toward autistic tendencies than girls. Yet it is becoming increasingly clear this is itself a misdiagnosis.

It has been found that women and girls face a unique set of difficulties during the diagnostic process, and even in being believed by family, friends and co-workers once they are diagnosed.

The current male to female ratio of diagnosed autism is 4:1 and woman and girls with autism continue to express their dissatisfaction with the difficulties they face in comparison to men and boys.

Pioneering work by Lorna Wing has helped to move forward our understanding of how gender interacts with autism. In particular, it has become clear that the way we assess autism as medical professionals has been specifically tailored to the more visible male presentation of the condition – at the exclusion of thousands of women who have not received the support they need.


Listen to the people who have suffered learning disability and autism hate crime

Research shows that many autistic girls have become highly adept at using mimicry and performance to mask or camouflage their autistic presentation.

Autism spectrum disorder (ASD) is characterised by deficits in social communication and interaction, allied to restricted repetitive behaviours and interests (aka special interests). Both need to be observed for an ASD diagnosis.

However, it is frequently the case that girls have fewer special interests than boys – or at least that the interests of girls on the spectrum are similar to girls without ASD, making them harder to spot. Furthermore, girls are typically more sociable than their male counterparts, at least superficially, and this includes autistic girls too.

However, we can now make the case strongly that many girls, due to their “social skills” and heightened societal expectations of sociability, are simply better at masking their condition to fit in. It is as though mimicry of social manner is itself a special interest, in which many girls have become expert – often outfoxing the medical profession.

This is deeply troubling, as it means that autistic women have to exert an extraordinary amount of energy in social situations, often ending up exhausted, stressed and feeling as though no-one truly understands them.

What we must do better

The current WHO international diagnostic criteria for autism do not give examples of the types of difficulties typically experienced by women and girls.

In the short term, it is therefore important for practitioners to see diagnosis as more than simply a box-checking exercise. This means taking a developmental history, and observing the women in different situations so that it can be distinguished whether assumed behaviours are based on intellect or social intuition.

However, ultimately we need better diagnostic tools and better training for mental health professionals on the camouflaging effect and the impact of gender on autism. That is a challenge for the profession, and one we must tackle together through the sharing of best practice. At Tracscare, for example, we regularly hold open-to-all conferences that focus on autism, particularly female autism, and the latest diagnostic research, as well as sharing the experiences of the individuals we support such as Pamela Hirsch, who wasn’t diagnosed until well into her 40s.

Last year a Twitter hashtag #SheCantBeAutistic was used by thousands of women around the world to show how their autism was either misdiagnosed, or rejected altogether, due to the gender stereotypes which dominate the diagnostic criteria.

A year on women are still using the hashtag, the World Health Organisation has yet to update their diagnostic criteria for autism and women and girls continue to be misdiagnosed.

The simple fact is that more needs to be done so that thousands of women and girls don’t struggle unnecessarily without the care and support that they need.


‘I’m not bad, I’m not ill, I’m autistic ’: Woman’s relief on being finally diagnosed at 42

Loud noises and bright lights terrified her, school gave her meltdowns. For years Dawn-joy Leong didn’t know why, until she found out she had Asperger’s Syndrome, she tells On the Red Dot.

“It was a wonderful feeling. I’m not ill, I’m not evil; I’m autistic.” When you finally discover at age 42 that you’ve had autism all along – and the meltdowns you’ve been having suddenly make sense. Read her story, Watch the episode of On The Red Dot .For over 40 years, Dr Dawn-joy Leong struggled to come to terms with some of her eccentricities and social awkwardness.

She had always known that she was different from her friends and relatives, but couldn’t figure out why.

It was only 10 years ago, when she was 42 and her struggle neared breaking point, that she discovered that she was on the autism spectrum – and it all made perfect sense, as people with the disorder sometimes face difficulties communicating and interacting with others.

Unlike autistic children who are diagnosed early and if need be, attend special needs schools, Dr Leong attended a regular school which turned out to be daunting – at times, even traumatic.

Dr Leong is extra sensitive to sound and light, common among people with autism spectrum disorder. “School gave me endless meltdowns.  I spent all my energies in school coping with the lights and the sounds.

“Classroom sounds were excruciating because the children dragged their chairs and desks were moved around,” she recalled.


The sensory overload also resulted in her having frequent meltdowns at public places such as wet markets.

“I grew up at a time where the wet markets allowed the fresh slaughter of chickens. I could hear the chickens screaming and the water boiling.

“For a regular person, it was probably nothing, part of the background noise. But in my head, it was like an orchestra, very loud,” recounted Dr Leong, now 52.

Dawn-joy Leong is more sensitive than most people to sounds, lights and textures.

That hypersensitivity to sounds, lights and textures meant that she was susceptible to nausea and vomiting.

I would start to get headaches. It felt as if there were knives stabbing through my ears, going in this way, coming out the other way.

Her young sister Ms Althea Leong remembers the frequent meltdowns in school, and how Dr Leong would cry, scream and refuse to listen to the teachers’ instructions.

In her report card, her teachers frequently remarked that “Dawn was argumentative, too talkative and too rude. She has to learn to smile more, to be more friendly, to mix around more”, Ms Leong recalled.

In school, the scraping of chairs against the floor was excruciating to her.

It was a relief, she said, when her older sister found out about her condition in 2007 – somewhat by accident.

Dr Leong had decided to seek psychiatric help after dealing with the stress of studying abroad, living on her own, and coping with her father’s death, which had left her feeling suicidal.


Dr Leong said that it took three sessions before they diagnosed her with Asperger’s syndrome, a condition on the autism spectrum.

“He (the doctor) said ‘actually, you’re not going out of your mind, you’re not a bad person. You have Asperger’s syndrome’.

“It was a wonderful feeling. I am not bad, I am not ill, I am not evil – I am just autistic. It gave me an explanation for why I would react in certain circumstances, my social confusion and especially the sensory difficulties. Why would I have a breakdown at the wet market?” she said.

Watch: How Lucy, her assistance dog, helps her cope (3:00)

Contrary to what many think, autism is a wide spectrum and Dr Leong is not an anomaly: As many as 1 in 150 adults have it.

The programme On the Red Dot (Fridays, 9.30pm on Mediacorp Channel 5) profiles special needs individuals like Dr Leong, focusing on how they cope with their condition and how the community tries to help them.

Autism in adults is harder to diagnose as it may be more difficult to assess their childhood development. Autism spectrum disorders are diagnosed by obtaining detailed developmental history from these patients’ parents, through observation of their behaviours and also psychological assessments.

For Dr Leong, she’s grateful for some of the help that she received in her earlier years, despite her oddball ways.

“I was still the odd kid, but in a music programme, I think every kid is odd,” Dr Leong said.

For example, she had applied to a music programme at the University of Hong Kong after failing her A-Level examinations. The university offered her a probation placement on the condition that she re-take and pass her A-Level examinations.

Some of the professors, on seeing her potential, even helped her to prepare, and she was subsequently admitted. “I was still the odd kid but in a music programme, I think every kid is odd,” she said.


Since her diagnosis in 2007, Dr Leong has focused on portraying autism through art and music.

She has a Master of Philosophy degree in music composition from the University of Hong Kong and a PhD in autism and art at the University of New South Wales in Sydney.

Today, she is well known and respected in the autism community for her activism and art aimed at helping people better understand autism. She said:

Autistic people like myself, we just hope for respect as human beings and an understanding of our culture.

Nurse Siti Zulaiha Md Erfan, who has worked with autistic adults, said that society is generally more receptive to autism in children and the elderly than in adults.

In the support groups that she attends, the 37-year-old said, the adults with autism look up to Dr Leong and her works. Madam Siti’s own 10-year-old child is autistic, and she is worried about whether society will accept him when he’s an adult.

“When people see a young adult (with autism) talking to themselves or flapping their arms, people will think that these people are crazy, and no help will be given.

“I’m not really worried about him taking care of himself. I’m more worried about how society is going to accept him,” she said.


Fever During Pregnancy Tied to Autism in Study

Children whose moms have any type of fever during pregnancy may have slightly increased odds of developing an autism spectrum disorder, a new study suggests.

The large study found that one episode of fever in the second trimester might increase the risk for autism by 40 percent. Several bouts of fever after the twelfth week of pregnancy could raise the risk threefold, researchers reported.

“Fever is a response to a wide range of infections, and it is common during pregnancy,” said lead researcher Dr. Mady Hornig. She’s an associate professor of epidemiology at Columbia University’s Mailman School of Public Health in New York City.

But she pointed out, “The absolute risk is low. The vast majority of women who get an infection with fever, even flu, are not going to end up having a child with autism.”

Hornig also cautioned this study cannot prove that a fever during pregnancy causes autism, only that there appears to be an association.

The researchers also cannot tell what it is about fever that might have this effect. Hornig speculated that it might involve the body’s reaction to a fever-causing infection that also has an effect on fetal brain development.

“There is something in the mother’s immune response that may increase the risk for the infant,” Hornig said. “But it’s not in every mother. We don’t think this is a pathway for autism. We don’t think it’s the only way autism is triggered in children.”

Surprisingly, the researchers didn’t see much reduction in the fever-associated risk when women took acetaminophen (Tylenol), Hornig said. “We anticipated that we would have seen more of an effect,” she said.

Thomas Frazier, the chief science officer of Autism Speaks, said, “Unfortunately, the study is not able to determine exactly what is driving this relationship — the fever itself, any maternal infection, or specific types of infections.”

For the study, Hornig and colleagues collected data on nearly 100,000 children born in Norway between 1999 and 2009.

Among these kids, nearly 600 were diagnosed with autism spectrum disorder.

Mothers of almost 16,000 children reported having one or more fevers during pregnancy. That rate — 16 percent — is similar to the rate of fevers reported by pregnant women in the United States, Hornig said.

The researchers found that the risk for autism was increased 34 percent when mothers reported fever at any time during pregnancy.

Breaking it down by trimester of pregnancy, the rate of autism increased 34 percent when a mother had a fever in the first trimester, and by 40 percent for a fever in the second trimester. By the third trimester, a fever in the mother was tied to a 15 percent higher risk of autism, the study found.

The risk increased with the number of bouts of fever. The risk was 1.3 times higher with one or two fevers after the twelfth week of pregnancy. And, for women who had three or more fevers after the first trimester, the risk of autism was more than three times higher, the researchers reported.

In addition, women who took acetaminophen for fever in the second trimester only slightly reduced the odds their child would have autism, the researchers found.

Among mothers who took ibuprofen (Advil), however, no cases of autism were reported. However, the researchers couldn’t tell whether the drug reduced the risk for autism, because only a few women took ibuprofen for fever, Hornig said.

Reacting to the study, Dr. Trevor Resnick, a pediatric neurologist at Nicklaus Children’s Hospital in Miami, said that these findings are not something that’s unexpected.

“Autism is an abnormal brain function. Abnormal brain development can be caused by many things including genes and certain diseases that affect the brain,” Resnick said.

If there is an injury to the brain during its development, it can also predispose a child to autism, he said.

“But it doesn’t have to be autism, it could be epilepsy, or a brain malformation, depending on which virus it is and how it affects brain development. So it’s no stretch of the imagination to say that there may be a virus that affects brain development and results in autism,” Resnick said.

It isn’t clear, however, if it’s the fever that’s predisposing the baby to autism or the cause of the fever or the body’s immune response to the infection, Resnick said.

“Women should not be freaked out,” he said. “Some women may be unlucky enough to get the wrong virus at the wrong time, and they are at risk. Predominantly, women who get viruses have babies that are fine,” Resnick said.


Baby brain scans can predict who is likely to develop autism

A machine-learning algorithm has analysed brain scans of 6-month-old children and predicted with near-certainty whether they will show signs of autism when they reach the age of 2. The finding means we may soon be able to intervene before symptoms appear, although whether that would be desirable is a controversial issue.

“We have been trying to identify autism as early as possible, most importantly before the actual behavioural symptoms of autism appear,” says team member Robert Emerson of the University of North Carolina at Chapel Hill.

Previous work has identified that bundles of nerve fibres in the brain develop differently in infants with older siblings with autism from how they do in infants without this familial risk factor. The changes in these white matter tracts in the brain are visible at 6 months.

For the new study, Emerson and his team did fMRI brain scans of 59 sleeping infants, all of whom were aged 6 months and had older siblings with autism, which means they are more likely to develop autism themselves.

Connecting the dots

The scans collected data from 230 brain regions, showing the 26,335 connections between them. When the team followed-up with the children at the age of 2, 11 had been diagnosed with an autism-like condition. The team used the brain scans from when the babies were 6 months old and behavioural data from when the children were 2 years old to train a machine-learning program to identify any brain connectivity patterns that might be linked to later signs of autism, such as repetitive behaviour, difficulties with language, or problems relating socially to others.

After the training, the program used only the patterns from the 6-month-old brains to predict which of the children would show signs of autism at 2 years old. It correctly identified nine of the 11 who had been diagnosed at that age.

“The study confirms that autism has a biological basis, manifest in the brain before behavioural symptoms appear, and that autism is not due to environmental effects that occur after 6 months, for example, vaccinations,” says Uta Frith of University College London. “This still needs pointing out.”

The goal is to use such a classifier system to identify infants likely to develop autism at an early age. “That is the idea,” says Emerson. “What we desperately need to do is replicate the study first.”

Boosting communication

The ability to predict who will develop behaviours linked to autism raises the prospect of giving training to parents so they can reduce the impact of some less-positive aspects of autism. Emily Jones of Birkbeck, University of London, and her colleagues have studied early interventions in which parents enhance their own responses to an infant’s social communication cues and behaviours. “We have shown that those kinds of interventions can help in reducing symptoms long term, both behaviourally and also in the brain,” says Jones.

About 20 per cent of children with a high familial risk of autism go on to be diagnosed with the condition, but only around 1.5 per cent of the general population have autism. If Emerson’s system can provide a way to predict which high-risk infants might benefit from early interventions, the challenge will be to extend the technique to work for children with a lower likelihood of developing autism.

“Even if the classification works well on the present data set, we don’t know how well it would work with a completely new set,” says Frith, who warns that the machine learning algorithms could lead to false positives.

The idea of intervening before behavioural characteristics appear is a controversial one. Many people consider autism to be a fundamental part of their personality, and although some autistic people have substantial difficulty communicating or forming relationships, some people with autism value traits such as abilities to concentrate, pay attention to detail or see things from a novel perspective. It’s hard to know whether early intervention could disrupt these.

In theory, machine-learning algorithms may be able to identify not just children who are likely to develop autism, but those who are likely to have particular problems, such as difficulties with language. If so, then early intervention therapies could be targeted to those who would benefit from help fostering those specific skills. “That probably could remove some of the controversy,” says Jones.


Why Do Girls Show Signs of Autism Later Than Boys?

New research looks at the reasons autistic characteristics show up at a later age in girls, and how that phenomenon affects diagnosis and treatment.

Why do girls seem to develop autism later than boys?

And does this affect the way girls are diagnosed and treated for the condition?

Those are questions being discussed intently at an annual conference in California.

A research team, led by William Mandy, PhD, senior lecturer in clinical psychology at University College London, says it has gained new insights into the different ways that autistic characteristics present themselves in girls during adolescence.

Mandy presented the findings today at the 16th Annual International Meeting for Autism Research (IMFAR) in San Francisco.

The findings are new, but they echo theories offered by Hans Asperger in 1943 that were never tested. Asperger, a medical theorist, is known for his early work into autism spectrum disorders.

Mandy’s team conducted a longitudinal study, which repeatedly gathered data for the same test subjects over a period of time.

Researchers found that while boys tend to display stable, similar autistic characteristics throughout their adolescence, girls are more likely to see these characteristics ramp up during the teen and preteen years.

The findings could help explain why boys tend to be diagnosed with autism earlier than girls, and also how guidelines for diagnosing autism in children could be biased against girls.

A difficult disorder to pin down

Autism is not the easiest condition to diagnose.

“Unlike some physical health difficulties, we don’t have a biomarker for autism,” Mandy told Healthline. “We don’t have blood tests or brain scans. We can’t actually see autism itself, so instead we do what people do in all mental health disorders, pretty much. We diagnose it not by looking at the thing itself, but by looking at its manifestation, its size, and its symptoms.”

In short, diagnosing autism isn’t quite an exact science. The criteria for diagnosing autism includes a group of observable characteristics and behaviors that the medical community has come to a consensus on as representing autism.

Autism is not a black-and-white thing.
William Mandy, University College London

Generally speaking, these characteristics come down to difficulties in the realm of social communication and flexibility when it comes to things like switching activities and focus. Other autistic characteristics include sensitivity to outside stimuli like bright lights or loud noises.

“Autism is not a black and white thing,” said Mandy. “It’s a dimensional condition. So the people that we label as having autism are really just at the extreme end of a continuum that extends all the way through the population with no clear natural cut point between those that have autism and those that don’t. And what’s become clear from the research is that having autistic traits, even if they’re not at the level where we would conventionally label someone as having a clinical diagnosis of autism, that’s still a risk factor for a range of difficulties. For example, developing social anxiety problems, conduct problems, or anorexia.”

Research is first of its kind

Mandy’s team looked at autistic traits in the general population, rather than limiting itself just to those people who are at the extreme end of the spectrum.

Autistic traits for the same group of children and adolescents was measured at ages 7, 10, 13, and 16.

Boys who showed high levels of autistic traits at age 7 tended to remain consistent over time, demonstrating similar traits at older ages.

Girls, on the other hand, showed a marked increase in levels of autistic social difficulties between the ages of 10 and 16.

Mandy said the findings were surprising, as previous medical wisdom stated that girls and women with autistic traits tended to “camouflage” them as they got older.

“If anything, I expected to see a decline in autistic symptoms in girls over time,” he said. “What’s very interesting is that there was one person who suggested the opposite, and that was Hans Asperger himself. There’s this rather intriguing sentence from this paper he wrote in the 1940s, where he’s wondering why we never see girls with what he would call ‘autistic psychopathologies.’ And he said, ‘Well, maybe it’s because these traits don’t show onset until adolescence with females.’ And nobody tested that idea. So it’s intriguing that that would be what we appear to have found on this occasion.”

Possible diagnostic pitfalls

So, are girls getting short-changed when it comes to autism diagnoses?

“It’s possible — it’s likely, in fact — that our current diagnostic criteria are rather biased toward the male presentation, and biased against the female presentation, said Mandy. “And there’s always been a sort of circular situation, that almost all autism research is done on males, which means that your diagnostic criteria reflects males, which means that you can continue to recruit a predominance of males in your research, and so it goes on.”

Besides this apparent bias, there’s also a strong likelihood that girls with autism present autistic characteristics in ways that are different – and subtler – than what are seen in boys.

One characteristic of autism, that holds true with both sexes, is a strongly focused interest on a particular topic.

Where the sexes often differ, says Mandy, is in the nature of this interest.

“There’s emerging evidence, and this certainly fits with my clinical impression, that girls with autism, their special and focused interests, are a little bit unusual than autistic boys,” he said. “They’re less likely to focus on something technical and specific, and perhaps more likely to focus on the social realm.”

So while a boy with autism might show a preoccupation with something technical like trains or buildings, a girl with autism is more likely to focus on hierarchies or lists of family and friends.

“Often, girls are more likely to be almost stereotypically gender-specific,” said Mandy. “So you meet a lot of autistic girls who are really into animals or horses, or fashion. And those interests, of course, don’t jump out at you as much. If you get a kid who comes along and says, ‘I’m obsessed with the District Line on the London Underground,’ then that looks unusual, and you think autism might be an issue. If you have a girl who says, ‘I’m obsessed with wearing the latest styles,’ that obviously doesn’t seem as unusual, so it’s less likely to alert people to the presence of autism.”

Mandy also points out that the way girls’ autistic traits seem to accelerate between the ages of 10 and 16 mirrors a changing and complex social world.

“I think for girls, there’s a phenomenon where they can be doing fine at primary education,” he explained, “but as the social world starts to become more complex, as they transition over into secondary school and the social demands of the adolescent female social world rapidly accelerate, these girls can really struggle, and people often don’t understand.”

Support always key

While changing guidelines to reflect traits of autism in girls seems like an obvious partial solution, it’s really not that simple.

Because autism exists on a spectrum and, as Mandy tells us, it’s not a black-and-white diagnosis, changing diagnostic guidelines could shift the focus too much.

“I think the way to go is to keep the same fundamental diagnosis,” Mandy said. “Fundamentally, this is about difficulties with social communication, a tendency toward inflexibility, but I do think that people need to be more flexible in thinking in terms of how these manifest and whether the way these manifest in girls and women — especially girls and women with a normal range IQ — is a bit different.”

I think we need better understanding of the early presentation of autism in girls, so we can identify them in a timely way.
William Mandy, University College London

People with autistic traits can thrive, but it’s crucial that their needs are recognized and that they’re placed in an environment where they’re able to excel.

“I think we need better understanding of the early presentation of autism in girls, so we can identify them in a timely way, and for those that need help, we can put that support in place before things start to go wrong in adolescence,” said Mandy. “I think we need to get better clinically at thinking dimensionally, and not just thinking in these black-and-white terms. Trying to understand people in a more subtle way, and thinking about if they have traits or conditions for autism diagnosis, those are important.”

Mandy says that now that his team has gleaned some new insights into autism in girls, they’d like to go more in-depth in order to better understand the condition.

“I think what we need to do now is look at it in a bit more depth. Who are these girls who are apparently not showing autistic traits in childhood, and who are showing them in adolescence?” he said. “And asking questions like, ‘Are these social difficulties actually autistic in nature, or are they arising from something else?’ If they are autistic in nature, what were the early indicators that were being missed by this measure of autistic traits in childhood? So, it’s really about trying to get a more detailed picture so we can properly understand the meaning of this finding.”


With autism, tracking devices may ease parents’ minds

n electronic tracking device can calm worried parents who fear their child with autism might wander off and stumble into danger, a new survey shows.

With the device, “parents were more comfortable letting their child spend time with family and friends,” explained lead researcher Dr. Andrew Adesman.

“When there is such a high wandering concern, parents are often not comfortable with their children spending any time outside of their direct supervision,” Adesman said. “But an electronic tracking device provides an additional form of assurance that if something were to happen, the risks could be mitigated.”

A full 96 percent of parents surveyed who said they were using an electronic tracking device claimed it improved their quality of life, Adesman said. He is chief of developmental & behavioral pediatrics at the Cohen Children’s Medical Center of New York.

“This is the largest study to date of children with autism who have wandered. It’s also the first study ever to systematically try to capture data from families about their experiences with these devices,” Adesman said.

Parents of children with autism were invited to participate in the survey via autism organizations nationwide, and Adesman’s team culled survey responses from more than 1,300 parents. All were asked specific questions about the severity of their child’s disorder, any previous wandering episodes, and what steps they’d taken to curb this behavior in the past.

Before using a tracking device, 87 percent of the parents said their concerns about wandering colored decisions about their child spending time with others. Only 60 percent of parents said this was the case while using such a device.

According to Adesman, the study tried to assess parental anxiety and stress associated with wandering concerns. The researchers wanted a better understanding of this problem, which Adesman believes has been inaccurately studied to date.

One expert said he was happy to see such a study published.

“I am not in the slightest bit surprised by this research, but I’m really glad it was done,” said Thomas Frazier, chief science officer for Autism Speaks.

The study “establishes something that we’ve suspected for a long time about individuals with autism or developmental disabilities wandering, and the need to track them for many reasons,” Frazier said. “The main one being that if they wander, they can be identified and brought back. But, also for quality-of-life issues, as the paper points out.”

Frazier’s clinical and personal experience helped him understand the increased peace of mind parents might receive from electronic tracking devices. He explained that many children with autism have no sense of boundaries, something he has personally witnessed with his son.

About 10 years ago, Frazier and his wife needed a police dog to find their young son who had wandered into the woods. He believes that scenario could have been avoided with an electronic tracking device.

Adesman said much has changed in the past decade.

“In recent years, there has been an increased appreciation of how common it is for children with autism spectrum disorders or other disorders to wander,” he said.

A recent survey from the U.S. Centers for Disease Control and Prevention estimated that about a quarter of a million children with autism or developmental disorders wander each year, Adesman noted.

“It’s a staggering figure. Sometimes these wandering episodes are benign, or sometimes they have tragic endings such as a drowning, motor vehicle accident or other forms of injury. Wandering is one of the most common causes of death in school-age children with autism, typically because of drowning,” he added.

While Adesman suggested that electronic tracking devices could help parents find their child before a tragedy occurs, there are still several issues parents included in the survey said they faced.

Forty-two percent of parents who do not use these devices avoid them because their child either would not like wearing it or it would not fit. Additionally, 44 percent said the cost of the devices was too high, the findings showed.

Frazier said the tracking devices can cost somewhere around $200, depending on the product and the company selling it.

He added that the devices have changed dramatically over the years. They are no longer bulky, and come in a variety of options that can be worn on the wrist or clipped to clothing. He encourages parents to research styles to determine what would work best for their child.

“For families that don’t have a lot of means, sometimes there are local resources, such as the county board for developmental disabilities or other local groups who are willing to provide a grant or funding,” Frazier recommended. “This is possibly one of the best uses of that funding that you can get.”


Rheumatoid Arthritis Deaths Have Decreased

While disability rates among people with RA have risen slightly, mortality rates are declining for the first time in years.

Many study findings about rheumatoid arthritis (RA) sound negative, but patients with the disease are now getting some encouraging news.

A study published last month on the progress and advancements in RA treatment and management revealed that for the first time in years the mortality rate among people with RA has decreased.

Researchers also noted that people with the disease experience much less disability than in decades past.


The mortality numbers

Data from the World Health Organization (WHO) shows that RA was listed as the underlying cause of death in 8,428 cases in 2011.

That was a decrease from 9,281 deaths in 1987.

The age-standardized mortality rate of RA declined by 3 percent annually from 1987 to 2011.

But people with RA still have a higher mortality rate than the general population.

The Centers for Disease Control and Prevention (CDC) notes that early treatment — within six months of diagnosis — is ideal to help curb aggressive disease activity or early deaths from RA.

What is working?

Researchers are now trying to ascertain which specific approaches have helped bring down the RA mortality rate.

In general, it seems that the long-term outlook for people with RA is improving — but only with early treatment. This was evidenced in a study following a group of people with RA for 20 years.

Early treatment means getting the right diagnosis and “catching” the RA early in the progression of the disease.

There are some mixed opinions within the rheumatology community about what the first line of defense is in RA treatment, but the general consensus is that a more aggressive approach in the earlier stages is best.

This research emphasizes the importance of early treatment and the long-term benefits of early treatment.
Suzanne Verstappen, University of Manchester

People with lower disease activity tended to fare better long term.

But, overall, while people with RA reported a lower disease activity early on, disability rates did tend to rise in people with RA seven years after diagnosis.

The disability reported was moderate but still better than compared with previous decades.

A press release about these discoveries noted that “patients who received treatment within the first six months had a lower risk of death than those who did not receive treatment, after controlling for disease severity.”

“This research emphasizes the importance of early treatment and the long-term benefits of early treatment,” said Suzanne Verstappen, PhD, a senior research fellow at the University of Manchester, and a lead researcher on these study, said in a press statement. “In the early 1990s, when this study started, only 30 percent of patients received early treatment, but this number has increased significantly in the last decade. It’s expected that in the next 10 years, newly diagnosed patients will have a better future with respect to functional ability, less severe disease activity, and improved quality of life.”

Issues associated with survival

In the past, there was a higher RA mortality rate due to complications such as lung and heart issues associated with severe RA disease activity.

Other people succumbed to fatal infections from RA medications, or other unique complications associated with RA and its comorbidities.

The higher survival rate is welcome news for people with RA, but there are issues related to living longer with the disease.

“Although increased survival with rheumatoid arthritis is great news, it might lead to a greater share of our aging population having the disease and in need of health services. This needs to be accounted for in healthcare planning,” said study lead author Aliasghar Kiadaliri, PhD, of Lund University in Sweden, in a statement to the press.

I would love to live a longer and healthier life even with having a serious illness like RA.
Jacqueline Dickson, living with rheumatoid arthritis

People with RA, though, still look at this news as a positive thing.

“With so much bad news regarding the healthcare bill and funding for NIH research being cut and just the difficulties of RA in general, it is nice to get good news for once. I would love to live a longer and healthier life even with having a serious illness like RA,” said Jacqueline Dickson of North Carolina.

“I am only 23 and was just recently diagnosed with rheumatoid arthritis,” added Michelle Herbert of Nevada. “I wondered if it would affect my life expectancy, and told my doctor that I’d try whatever she suggested to make sure my disease didn’t progress too badly. It’s good to know that aggressive treatment early in the disease is seen as a positive, but I just hope my doctors caught it in time because I had so many years of pain.”