Being a girl or woman with autism is hard: it’s only in the past two to three years that many professionals have begun to recognise that the condition is not limited to boys and men. But what’s harder is to be a mother with autism – and harder than that, is to be a mother with autism, of children with autism.
Experts say that there is a hidden pool of mothers who have grown up with undiagnosed autism. These women often only recognise their own condition when researching their children’s symptoms.
About a fifth of people with autism are thought to have been diagnosed as adults, although no national figures for adult diagnosis are available. Women with autism are most likely to remain undiagnosed: a survey by the National Autistic Society found that twice as many women were undiagnosed compared with men (10% against 5%).
Even once diagnosed, mothers with autism often hide their condition from the outside world, terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.
“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Dr Judith Gould, the lead consultant and former director of the Lorna Wing Centre for Autism who developed the first and only female-specific diagnostic tests, and who trains doctors in how to recognise late-adult female diagnosis.
Laura James
Married with four children aged 19 to 26 – two of whom are neurodiverse and two neurotypical – Laura James has written Odd Girl Out, the first memoir by a British woman with autism to be published by a mainstream UK publisher. She was diagnosed last year.
“I mothered my children in a very different way to a neurotypical mother. For a start, I never told them off about anything. It just doesn’t seem logical to me. If they’re doing something you don’t like, it’s because you have a preconceived idea of how children should be, behave or look. That’s illogical. If, on the other hand, they are doing something dangerous, then it’s much more effective to sit down and discuss it with them.
If they’re in trouble, I’ll do everything practical I can to help them. It would be illogical to punish them
“The consequence of this approach is that I’ve got one child who has always had straight As and is now heading for a first at university – and I have another child who has never passed an exam and doesn’t care. I’m equally proud of them both because I want my children to be content, happy and in a place of safety. To me, academic success isn’t a logical step towards that goal. I love my children desperately and would do anything for them, but I do think I don’t understand that fieriness that comes about when people talk about parenting. I simply don’t feel that sense of passion that neurotypical parents seem to feel.
“It could be because of this lack of passion that I have a different relationship with my children than most parents do: they like to hang out with me and message me just as much as they do their friends, and there’s nothing they would not tell me because they know I would never, ever get angry with them. If they’re in trouble, I’ll do everything practical I can to help them, which means it would be illogical to get angry, upset or punish them.”
Nicola
Nicola, 39, was diagnosed at 34 after stumbling across information on autism and women when researching her son’s symptoms. Her son, Andrew, was diagnosed at two and Nicola received her diagnosis six months later. It took four years, however, to get last year’s diagnosis for her daughter, Marion, now eight (the names of her children have been changed).
“My children are happy and doing well at school. What other measure can there be that I’m a good mother? But because of my autism, I live in fear. Society thinks that autistic mothers are, first and foremost, a safeguarding issue. I’m terrified that social services will take them away from me.
My son loves his squeezes and hugs, and I give them to him even though I find it almost intolerable to do so
“I’m not worried about whether I’m a good mother or not. I know I am. I also know that my autism helps me be a good mother: autistic people get obsessions, and my obsession is making sure I’m doing everything I can to give my children everything they need, to love them, fight for them, and get them to adulthood healthy and happy.
“When my husband and I decided to start trying for children, I knew that I didn’t have any idea how to be a mother: my own childhood had been very unhappy. So I did loads of research. That’s how I discovered that children need cuddles and affection, and even though I don’t do touching – my idea of heaven is to live in a parallel non-touching world to everyone else – I make sure my kids get all the physical affection they need. My son loves his squeezes and hugs, and I give them to him even though I find it almost intolerable.
“Being autistic has meant my autistic children have grown up without the usual pressures and stresses that neurotypical parents can unknowingly subject their children to. My parents tried to force me to be ‘normal’ and to conform. They tried to force me to socialise, eat normally, behave normally. It was terrible: I grew up in fear and trauma.
“Before I knew that my children or I were autistic, it was natural to me to give them an autistic-friendly upbringing when they showed signs that was what they wanted. I didn’t think there was anything strange in it at all. And thank God I did: it means my children have never been stressed at home because of their autism.
“I’m not sure I would have been such a good mother to non-autistic children. I find it completely normal that my daughter plays by arranging her rubbers and then looking up more rubbers on the computer. It’s how I play, and I can do that with her for hours. But when my stepson wants to do imaginary play with his dinosaurs, I’m completely at sea.”
Melanie Mahjenta
‘My autism was ultimately a good thing’ … Melanie Mahjenta with Rosie as a baby.
Melanie Mahjenta was accused of a rare form of child abuse – fabricated or induced illness (FII) – by paediatricians and social services in 2015 during her fight to get her three-year-old daughter, Rosie, diagnosed with autism.
“Rosie was incorrectly diagnosed as not being autistic in 2013, despite the results from a clinical assessment which found she was on the spectrum,” says Melanie. “I believe the team rejected the assessment results because they had a basic lack of understanding about the different manifestations of autism, particularly in females. They refused me a second opinion, which is unlawful, and accused me of fabricating Rosie’s symptoms.
Part of being autistic is being unable to cope with injustice
“The team also failed to recognise that I was on the autistic spectrum, although I told them that I believed I was. They should have been able to recognise my behaviour – which I understand can be challenging – as typical of an autistic parent. Instead, in 2014, they held a safeguarding meeting to discuss whether I was exaggerating Rosie’s symptoms. This single area of concern led directly to a referral to children’s services and to Rosie being made a child in need, a decision that was taken without any formal review.
“When Rosie was made a child in need, my friends and family told me to stop fighting for her diagnosis. But I couldn’t stop: part of being autistic is being unable to cope with injustice.
“I understand that my autism makes me a difficult person to deal with: I don’t know when to back off when I know I’m right. Maybe I can’t always look people in the eye, so perhaps I come over as being shifty. Autistic people do hyper-focus, but they mistook my obsession as a sign I was unstable.
“But although those traits are hard for people to deal with, my autism was ultimately a good thing. Perhaps a neurotypical person would have thought the doctor knew best and backed off. Or they would have stopped fighting because they feared losing their child. But I fought on and because of that, not only has Rosie finally been diagnosed with autism, opening the doors for more support, but the ombudsman found in my favour on all my points, and even awarded us damages.”
Carly Jones
Carly Jones.
Carly Jones, 35, is a divorced parent of three daughters: Chloe, 18, Honey, 14, and Cherish, nine. “Chloe is neurotypical. Honey was diagnosed in 2008 at six with Asperger’s, and Cherish was diagnosed two years later with autism, at two years old. I was diagnosed four years after Cherish. It was 2014 and I was 32.
“Not knowing what was ‘wrong’ with me until I was 32 was catastrophic for my life in many ways. Not knowing I was autistic meant I didn’t cope at school and left with no GCSEs. I got pregnant at 15, suffered abuse, got into controlling relationships, and mistook users and bad people for real friends.
“But part of me is glad that I didn’t know I was autistic until I had already had children. I don’t know that I would have been brave enough to have had them, had I known I was autistic. I might well have been too cautious to think I could be a good mother.
I only admit that I’m autistic to better support my daughters and jump hurdles on their behalf
“There is so much judgment against autistic mothers that I consider myself genuinely lucky never to have been subjected to the interrogation of the social service professionals. It’s a constant cause of terror for autistic mothers. I only admit that I’m autistic to better support my daughters and jump those hurdles on their behalf. I’ve done it because what happens when my daughters grow up if they decide to become parents? What hurdles and preventions and heartbreak will they face if autistic mothers do not stand up today and tell people how we can be an utter success for our families?
“The level of care an autistic girl needs to be able to socialise is vast. Because I’m autistic, I understand and will spend the necessary hours helping them, before they go out socially, to work out everything that could possibly happen when they’re out and how they could react. We then work out a contingency plan for if something happens that we have not predicted. A neurotypical mother might not understand this, with the result that their children go out unprepared, or don’t go out at all.
“Because I’ve been the subject of it myself, I also know how common it is for autistic people to be horribly abused. I’ve had to find a way of helping my daughters to be mindful of their vulnerability without them seeing it as a deficit or negative, or becoming cynical. I also know, from my own experience, that autistic people often don’t tell you about the abuse they’ve suffered, because they assume everyone knows what they do. I’ve had to always remember to press my daughters to tell me everything about their days that could be important in keeping them safe and happy.”
• Amelia Hill will be in conversation with Laura James, who will answer questions about what it means to be a mother with autism at a Facebook Live event at 1pm on 19 April. Watch the live stream at https://www. facebook.com/theguardian
On a hot late-July day two years ago I made my way out of the consulting rooms of the Anchor Psychiatry Group and paused on the pavement wondering what on earth to do next. I was 45 and had just been diagnosed with autism.
I went to the appointment alone. It hadn’t occurred to me to take my husband or a friend with me. I stood motionless, while others ambled past in groups, off to the pub for a Friday night drink. That moment seemed to encapsulate my whole life.
The diagnosis was both a shock and not a shock. Ever since I could remember I had been longing to find out why I behaved the way I did and why I was so unlike my peers. I find it difficult to recognise and name my emotions, but those I experienced that day seemed different to any I had felt before. Good feelings to me are pink. Bad ones are green. These were made up of all the colours of the rainbow. Not mixing together to make a sludge-brown, but rather like the flashes of colour you see when the washing machine spins a mixed load.
A few months before, I had been diagnosed with a genetic condition called Ehlers-Danlos syndrome. It’s a connective tissue disorder that causes digestive issues, easy bruising, limbs to dislocate easily and many other unpleasant symptoms. It seems many of those with EDS are also autistic. My autism diagnosis was the final piece of the puzzle for me. Having waited more than 40 years, in the space of a few short months I learned why both my body and my mind operate differently to those of most others.
With the sun warming my back, I walked slowly to my car, stopping every few moments to process the news. I thought of how in The Sixth Sense Bruce Willis’s character, Dr Malcolm Crowe, replays scenes from the past and it becomes clear to him that he is in fact dead. In my mind, I played episodes from my childhood, my teens and my later life as a mother of four, aware for the first time how my autism explained so much.
They flashed into my consciousness as individual moments. Standing away from the group of girls giggling in the playground. Sitting in tears in an exam room, unable even to write my name on the paper. Walking past bars watching a group of women on a night out and wondering what it felt like. Staring at a plate of food, knowing that because the burger bun was wet from mayonnaise, I could no more eat it than I could run a marathon. Sitting in an office being so distracted by the buzzing of an overhead strip light that I didn’t notice the phone ringing on my desk. Spending an entire Saturday researching a special interest only to realise it was 7pm and I was still in my pyjamas and hadn’t eaten. With each scene came a feeling of context and understanding.
The diagnosis came as a vindication. All my life I had tried so hard to be neurotypical, but in that one moment it became utterly clear that it was never going to happen. I was never going to fit that mould. I had stepped out of the psychiatrist’s consulting room into a new reality. The colours around me seemed brighter, the noises sharper. Finally I had the answer I had been searching for all my life.
• Odd Girl Out by Laura James, £16.99, published by Bluebird
Sesame Street is adding a new character to its ranks – a muppet called Julia, who has autism.
Julia, a four-year-old with bright orange hair, a pink dress and a favorite toy rabbit called Fluffster, will make her debut on 10 April in an episode called “Meet Julia”. She has already appeared in Sesame Street cartoons and books, but this will be her first appearance on the famous children’s show.
“We wanted to address autism in general because of the growing number of children who are diagnosed with autism spectrum disorder,” Sherrie Westin, EVP of global social impact and philanthropy at Sesame Workshop, the non-profit behind Sesame Street, told the Guardian.
“We felt that creating a character who was autistic would allow children to identify her but equally important, it would allow us to model for all children the differences and commonalities of a child with autism.
“It was an opportunity to help explain autism and to help increase awareness and understanding.”
On Monday, Sesame Street released a number of video clips featuring Julia. One shows her sitting at a table, painting with some of the other characters. Big Bird arrives and says hello to Julia, who carries on with her work rather than saying hello back.
Big Bird and Sesame Street stalwart Elmo appeared on CBS’s 60 minutes on 17 March, to talk with host Lesley Stahl. Big Bird told Stahl he had initially been perturbed by Julia’s lack of response.
“I thought that maybe she didn’t like me,” Big Bird said.
“We had to explain to Big Bird that Julia likes Big Bird,” Elmo said. “It’s just that Julia has autism. So sometimes it takes her a little longer to do things.”
[embedded content]
Sesame Street introduces Julia to the Associated Press.
Later in the episode – according to a clip seen by the Associated Press – Julia becomes distressed when a siren goes off.
“She needs to take a break,” the muppets’ human friend Alan calmly explains. Julia soon relaxes and the friends carry on playing.
Another video shows Elmo approaching Julia, who is playing with Fluffster on her own. Elmo sees that Julia is focused on her own activity and says: “We can play side by side, like we do sometimes.”
“There’s lots of ways to play,” Elmo tells the camera.
Julia’s introduction is part of an initiative: “Sesame Street and Autism: See Amazing in all Children”. Sesame Workshop said it consulted with more than 250 organizations and experts over a five-year period, ahead of unveiling the character.
Julia is played by puppeteer Stacey Gordon, who told the Associated Press her 13-year-old son also has autism.
“The ‘Meet Julia’ episode is something that I wish my son’s friends had been able to see when they were small,” Gordon said. “I remember him having meltdowns and his classmates not understanding how to react.”
Family Constellation Therapy, sometimes known as Systemic Constellations, was created by Bert Hellinger, a German psychotherapist. This amazing method is used to uncover the source of chronic conditions, illnesses and emotional difficulties that may have roots in the inter-generational family systems, rather than the individual, and may be connected to a key stress event. Could resolving past family trauma help unlock the symptoms known as autism. Sadly, some form of autism is now observed in 1 in 55 children and is growing at a rate of more than 1,100 percent. Western medicine focuses on medication to suppress symptoms and alternative approaches focus on treating the underlying biomedical, physical, psychological and environmental causes of autism.
However, illness not only originates in our physical body, but can also originate in our energetic and spiritual body as well. So, it becomes imperative that we treat the entire person for a fuller recovery.
“Autism spectrum disorders can only be fully healed by restoring the self-regulation of the system and making it fully functional.” Klinghardt
This moving and powerful work in the family’s energetic field. This is also referred to as “the knowing field.” And, is used to examine the emotional factors connected to conditions such as illness, allergies, alcoholism, ADHD and autism. Some parents of children on the autism spectrum have experienced profound transformations as a result of this work for themselves, as well as for their families.
These children are often the recipients of unhealed trans-generational family issues because of their extraordinary energetic sensitivities. This perpetuates their illness.
Family constellation therapy work, focuses deeper on the ancestral family blueprint – the family soul. Our souls carry information from one lifetime to the next and from one generation to the next.
Children often hold the energetic field of their ancestors. This appears especially true with children with autism, because they are super-sensitive and spiritual souls. Who, often become unconsciously entangled with others in their family in the name of belonging or wanting to help restore balance in their family system. The purpose of a Family Constellation therapy session is to reveal that hidden dynamic and point the way toward resolution. And, there are often magical improvements in these children when we resolve issues in the family history.
The Forgotten One
One of the participants in a group “Michelle,” has a brother with severe autism who couldn’t speak and was very self-destructive. She was afraid that he could never live a more “normal” life because he refused all biomedical treatment and other therapies offered to him. In the initial set-up, the facilitator had Michelle, her brother, and both parents of her family represented in “the field.”
The participant representing her brother was hiding under a nearby chair and was rocking back and forth. Both parents were standing in the field, seemingly disinterested in what was going on. The sister (Michelle) kept looking down at the floor. Later in the set-up, it was revealed that the sister was looking down at a baby—a baby who had died of birth defects three generations ago. This baby hadn’t been properly acknowledged or mourned.
In essence, the brother with autism had taken the place of the “forgotten” baby. Representatives for the great-grandparents (the forgotten baby’s parents) were brought into “the field.” Then, the baby was embraced by the parents and a short dialogue was exchanged. The baby reported that he felt more at ease, relaxed and became more comfortable. A healing took place that was so profound. A year later, “Michelle” reported that her brother was starting to take a more active role in his recovery and was beginning to accept treatment.
War and Mental Illness
“Andrew,” a man in his twenties who was diagnosed with Asperger’s, participated in my group. He claimed that mental illness and psychosis ran in his family. He cried as he explained that he was taking multiple medications for bi-polar disorder. He claimed it was difficult for him to hold down a job. He often felt very alone. He stated that he did not have a good relationship with his parents. He said that his mom was “crazy.” The parents divorced when his was very small and he blames himself and his issues for why they split.
In the initial set-up of “his field,” Andrew was represented along with mental illness and his parents. As it unfolded, it became more obvious that something profound had happened in the past. Mental illness began taking on characteristics of a war and hidden dynamics were revealing themselves.
Later in the set-up, Andrew’s representative started choking, like he was trying to catch his breath. He was mumbling, “I deserve death because I have killed others.”
It was uncovered that his great-great grandfather was in World War I and was killed during a mustard gas attack. Andrew was doing service to the family out of deep love. He took on the feelings of the victim and the perpetrator, which caused him deep inner conflict. Hence, he was carrying the burden of mental illness and autism. In doing this soul work, Andrew was able to find resolution for himself as well as all the members of his family.
In conclusion, trans-generational traumas add to our toxic burden and predispose us to illness. Misfortune or unresolved conflict in our ancestry can create disturbances in the family field, which filter down into the psyche, nervous system and metabolic functioning. Children with health issues are particularly sensitive to such disturbances.
Therapy and biomedical interventions may even succeed better after a healing Family Constellation session with an experienced facilitator. Fortunately, it is never too late to heal wounds from the past. Constellation work is unique in that any living family member can do this intervention for the benefit of all.
Learn more about her book and her work to spread holistic health awareness at www.healingwithouthurting.com or Healing Without Hurting: Treating ADHD, Apraxia and Autism Spectrum Disorders Naturally and Effectively without Harmful Medication.
According to several surveys, each one child among 68 is autistic in the United States. The increasing number of the affected children is really threatening. There is a chance that you may find a friend, colleague or relative cursed by the disease autism. In most of the cases, children are the victims of this disease. Even if the affected child has no direct connection to you, you should help the child for the sake of humanity. Though the awareness regarding the disease is increasing, there are many people who do not know how they can offer any aid for autism. A list of ten tips is provided here to tell you how you can help an autistic child.
1. Be well aware of autism
First of all, you should have a clear concept of autism. In fact, the best way to aid for autism is to learn each detail about the disease. You can find a number of online resources to gather information about autism. There are many research articles that have discussed important aspects regarding autism such as home-based behavioral treatment of the autistic children.
2. Ask the parents about their kids
Whenever you are meeting the parents having autistic children, don’t forget to ask them about the kids. It will help you to gather knowledge about the disease and the children affected by the disease. You may also go to the non-profit organizations to meet the autistic children and know about them. A little information about the children will guide you about how to support them.
3. Don’t hesitate to go the extra mile
Parents of recently diagnosed children may not call, visit or come to your place as much as usual. If they belong to your friend circle or relatives, you would know that this is unusual. So, you should understand their condition. They might be busy with the doctors and the therapists to discuss the medications and treatments. They might be busy in calling the insurance company or the school authority. So, it is your responsibility to go the extra mile to catch them up. Such meetings can give the parents mental support and confidence.
4. Be patient
You should be patient enough to listen carefully to the parents talking about the diagnosis of autism of their children. You should keep it in your mind that the feelings of the parents may change from the day-to-day. So, you must be a good listener. You need to understand their circumstances and let them realize that you are available whenever they need any assistance.
5. Build friendship with the kids
The best way to deal with the kids is making a good bond with them. In your leisure, you may spend your times with the autistic children to know them better. Your presence and companionship can help them get positive vibes and confidence. You can become a kid too in order to give them company and I assure that it will give you immense pleasure.
6. Help the caregiver
Along with the affected children, you should also help their parents and their caregiver. It is obviously quite difficult to handle an autistic child. So, the caregivers also need assistance. You can offer to watch one of your friends’ kid with autism on behalf of the parents or caregivers.
7. Try to be comprehensive
If you are eager to aid for autism, you can try to teach your own children about the disease. It will guide your children to deal with the autistic friends in school. Some children bully the autistic children unconsciously. You should explain the disease to your kids in the simplest terms; you can invite their friends at your place and conduct one-on-one activities with the kids which can help the autistic children discover their hidden talents or the common interests they share with your kids and other healthy children. All you need is to be comprehensive.
8. Spread awareness
Awareness is really essential. Each year thousands of families suffer from autism. All of the affected families should come together to fight against the disease. Spreading awareness can help you to make them stand together. You can find a number of events and awareness camps taking place all over the country. You can inform one or more families about such events.
9. Donate for the children
Medical science has achieved great success to treat the disease successfully. It is possible to give an autistic child a better life if you can provide proper treatment to the child at the right time. Unfortunately, there is a large number of children who are deprived of proper treatment due to the expenses of the treatment. If you can donate whatever is possible for you; it will be a great aid for autism.
10. Help non-profit associations advocate
Advocating for the access to the services meant for autism is not so easy. The autism community gives immense priority to this advocation. It is no less than the world to the autistic children and their families. So, you can try to be an autism champion on the behalf of the community by advocating. Your simple step can help to change the life of an unfortunate child. Therefore, you may contact the organizations that aid for autism.
Summing up:
Nothing is more important to the parents than their children. There are many parents who have studied hard about the disease to find ways to raise their autistic children properly. Not only the parents, a large number of people have come to stand for autistic children in order to combat the disease. Don’t you want to be a part of this growing family that is supporting the children to get a better life? You little aid for autism can bring light to the world of the autistic children.
If you are eager to fight against autism and save countless children from the grip of this monster, you can join Aid for Autism.
One day during his last year at primary school, Jon Adams drew a picture of a street in Portsmouth, the city where he still lives. The scene he drew had no people in it, but its representation of everything else suggested a talent beyond his years.
The headteacher happened to see the picture, and said he wanted to put it up in the school’s entrance hall. “And that was an honour,” Adams says, “particularly for someone who didn’t think they were any good, because they’d been told they weren’t any good, every day.”
Adams was asked to write his name on the back, an instruction that threw up a choice. He had difficulties with writing, and he knew his class teacher could be cruel. “If I asked for help, I knew what he would say: ‘Oh, he can’t even spell his own name, what rubbish is that?’ So I did it myself.”
The teacher called Adams to the front of the class. “I went up, gave it to him, he held it up in front of the class, and then he tore it up. He said, ‘He’s spelled his name wrong – he’ll never be anything.’”
This happened 45 years ago. In recent years, Adams has been treated for post-traumatic stress disorder, caused at least partly by that episode, and how long it lived on, not just in his memory, but in his understanding of the world and his place in it. The story says a lot about the inhumanity that was once rife in the British education system; but it also shines light on what it’s like spending a lot of your life being not just misunderstood, but routinely insulted. “Someone telling you you’re no good every day worms its way inside your head,” Adams says. “Inside, you know you’re all right, so there’s this conflict going on.”
Since April 2013, Adams has known that he has Asperger syndrome – or, to put it another way, that he is autistic. Ten minutes online will tell you that Adams’ condition comes down to a so-called “triad of impairments” to do with social interaction, communication and imagination, or what some people call “flexibility of thought” – although the fact that Adams is a prolific artist suggests that, in his case, that last criterion might be misplaced.
Since 2013, many diagnoses of autism have also included a range of sensory issues, among them aversions to certain textures, sounds, smells and tastes, as well as a deep dislike of sudden noise. In Adams’ case, these seem to blur into a complex kind of synaesthesia: he understands music as something he can touch, and experiences the colour yellow as a profoundly unpleasant taste, like mould.
Adams sometimes talks about his condition in front of an audience, and there is one question that always comes up. “It goes: ‘My son’s eight, he sits in his room all day, he does Lego, he does complicated drawings, he won’t talk to anyone else – how do I make him socialise?’ Well, you don’t. He’s made his world. One day, he’ll show it to you. Don’t let him grow up thinking that the way he’s thinking and what he’s doing are faulty.”
***
Jon Adams was formally diagnosed at the age of 52, at an NHS clinic run as an offshoot of Cambridge University’s Autism Research Centre, after he was referred there by his GP. The initial spark had been a meeting with the centre’s founder and director, Simon Baron-Cohen (the cousin, in case anyone was wondering, of Sacha), who had spoken with Adams at the Cheltenham literature festival.
Adams had begun to realise what sat under a lot of his experiences; at the time, the biography that accompanied his work as an artist included the words “probably autistic”. From May 2012 until June 2013, he worked as the research centre’s artist-in-residence; immediately afterwards, a specialist gave him his formal diagnosis, a process that involved an interview and something akin to a questionnaire. “I got the letter through, saying I scored 18 out of 18 autistic traits, and I had Asperger’s,” Adams says.
I meet Baron-Cohen in a crowded Starbucks near St Paul’s Cathedral in London, where he wryly comments on the mixture of chatter, clattering cups and muzak – “For a lot of autistic people, this would probably be hell” – and casts his mind back over the 35 years he has been thinking about and researching autism. He started working with six autistic children in a special unit in Barnet, north London, in 1982. Fifteen years later, he set up the Cambridge research centre; two years after that, in 1999, he opened a clinic dedicated to diagnosing autistic adults.
My son received a diagnosis aged three. He had fixations with particular music or places – traits I recognise in myself
“There was a growing awareness that autism wasn’t just about kids,” he tells me. “I was receiving more and more emails saying, ‘My son’s an adult, but he’s never fitted in. Might he have autism?’ An adult couldn’t go to a child and adolescent clinic, so where were they meant to go? If they went to a learning disability clinic, and they had an IQ above 70, they’d be turned away. So these people were like a lost generation. That was a phrase I used a lot.”
The National Autistic Society estimates that there are currently around 700,000 people living with autism in the UK – more than one in every 100 of the population. Some of these people have learning disabilities. Some are what the medical vocabulary terms “non-verbal”, or unable to speak. Others are so-called “high-functioning”, a sub-group that includes those with Asperger syndrome, the condition named after the Austrian paediatrician who in the 1940s worked with a group of children he famously termed “little professors”. Asperger syndrome is distinguished by the fact that people who have it display no language delay as toddlers or small children. (Asperger died in 1980, long before the term “Asperger syndrome” entered popular usage. It has since been dropped from the relevant American diagnostic manual, but is still used in the UK.)
It is among this latter group that you will find many of the 20% of autistic people currently thought to have been diagnosed as adults. No national figures for adult autism diagnoses are available, but anecdotal evidence suggests numbers are rising: Baron-Cohen tells me that four years ago, 100 cases in Cambridgeshire were referred to his clinic; in the first four months of 2016 alone, it received 400 referrals.
Most of the terms used to describe autism don’t do justice to the nuanced, complicated traits bound up with it. Nonetheless, all its variants are covered by the catch-all term autism spectrum disorder, or ASD; people who dispute that autism is any kind of “disorder” prefer the term autism spectrum condition. The word “spectrum” was first used in this context by the pioneering British researcher Lorna Wing, who died in 2014. Baron-Cohen explains: “What she meant at the time, I think, was a spectrum within those who come to clinical attention. Where it’s gone since is that this spectrum runs right through society, out into the general population.”
My own interest in autism began when my son James received a diagnosis of ASD at the age of three. Back then, some things seemed strange: the social distance between him and his peers; his fixations with particular music (the Clash, the Beatles) or places; his pointed dislike of some foods or sounds (I still curse whoever invented the public toilet hand-dryer); his amazing facility with technology. Now, these things are simply part of the fabric of our shared life. I recognise echoes of myself in some of these traits (the music, the technology), and of plenty of other people: more than anything, his 10 years have brought me an ever-growing understanding of the complexities of human psychology, both among those diagnosed as “on the spectrum” and so-called “neurotypical” people.
Unfortunately, the everyday world has yet to catch up. Only 16% of adults diagnosed with autism in the UK are in full-time, paid employment. In 2014 Baron-Cohen’s team found that two-thirds of the patients in their clinic had either felt suicidal or planned to kill themselves, and that a third had attempted to do so. “To my mind, this is nothing to do with autism or Asperger syndrome,” he says. “These are secondary mental-health problems. You came into the world with autism, and the way the world reacted, or didn’t react, to you has led to a second problem, which is depression. And that’s preventable.”
***
A week after talking to Baron-Cohen, I take the train to the Lancashire town of Wigan, to meet 68-year-old Peter Street, who got his autism diagnosis only 10 months ago. He is an impish, funny presence, and says he loves conversation, perhaps a little too much. “I get this deep urge – it’s a pain, almost, to talk to people. When I’ve described it to the therapist, I’ve said I’m like a bucket of water and it’s full. And then all of it comes out, and it empties.”
Peter Street: ‘I get too much for people, and they get too much for me.’ Photograph: Rosie Barnes
After 20 minutes, it becomes clear that Street has the most astonishing life story of anyone I have ever interviewed. His mother, he says, became pregnant with him when she was raped. In his native Bolton, the two of them were taken in by a man much older than her, who employed her as his housekeeper, and then married her and adopted Street to give the arrangement a veneer of normality. He grew up, he says, with no extended family and very few friends. “I get too much for people, and they get too much for me. A lot of the time, I overpower people. When I was a kid, when I made a friend, I would go and sit on their doorstep, waiting for them. I’m a really early riser, and I can’t cope with being late anywhere. I used to go and sit on the doorstep, maybe six, seven in the morning. And people obviously didn’t like that.”
His daily routine, he says, often revolved around an outside toilet, and his home’s back wall, which he would use for solo games of football and marbles. “And that was wonderful, in some sense. It wouldn’t have been wonderful for some people, but it was for me.” He also made endless trips to the cinema, where he acquired a forensic knowledge of Greek mythology; he mentions Steve Reeves, the musclebound 1950s actor who played Hercules. “I can take certain things in – really odd things, sometimes,” he says. “But I can’t take in what most people take in every day.”
At school, he found it almost impossible to tune in to the teachers. “They were shit with me,” he says. “They knew how to abuse. They were good at it. They were bullies. They used to stand me in the corner, in the wastebasket, and hit me over the head with the board rubber, to knock some sense into me. I’ve always blamed my epilepsy on that.” He started having grand mal seizures when he was 15; it is now estimated that around a third of autistic people also experience epilepsy, though the relationship between the two is something that neuroscience has yet to fathom.
Street left school unable to read or write. He passed through a series of jobs – a bakery, a butcher’s shop – some of which came to an end because he found it difficult to process complex instructions, before settling into work as a gardener and gravedigger. Along the way, he married his wife, Sandra, with whom he has three grownup children. “She doesn’t like being with people,” he says. “She’s very quiet, very introverted. In a way, she’s a mirror.”
In 1984, after breaking his neck while trying to climb into a transit van that was pulling away, Street began three years in recovery. While he was in hospital, he met a fellow patient who was an English teacher, and started to work with him on his literacy; then, through adult education, he discovered a talent for poetry.
While we talk, he hands me an anthology of his work, published in 2009, that begins with a poem titled Not Being Me, a perfect glimpse into the autistic experience of not fitting in:
Childhood nights were dreams of being a sheep then up and out of a morning, a quick check to see
if by any chance in the night there had been a change of being just like all my friends and not the odd one out
In the late 1980s, Street began to teach poetry in schools and day centres; in the early 90s, he became a writer-in-residence at the BBC in Manchester, which led to a series of assignments. In 1993, he went to Croatia to write about the war that was then engulfing the Balkans. “People with autism, it’s often said that they have no emotion or empathy,” he says. “I have too much emotion, too much empathy. It broke my heart.” Three experiences preyed on him: a meeting with an 18-year-old abandoned in a refugee camp; an occasion when he gave his water ration to an emaciated woman with a newborn child; and the experience of eating a sumptuous meal in the town of Lipik, with “three or four kids at the window, looking in. And I didn’t have the balls to get up and go and give them my food.”
By 2014, his inability to put away these memories had become too much. “I went to a therapist. And she said, ‘I want you to go and see a friend of mine. She’s a specialist in diagnosing people with autism.’ I thought, ‘I’ll go along’, as you do. And she gave me these really strange games. They were like a jigsaw puzzle: four pieces. White. They were so simple, I thought I could do them – and I couldn’t.” He was handed five plastic figures and toys, and told to make a story with them. “And I couldn’t do that, either. I couldn’t connect them together into one story. She said I was highly intellectual, but on the autism spectrum.”
His response was one of enormous relief. “I cried. It was wonderful. Wonderful. Because all my life suddenly made sense. And none of it – the beatings, the abuse – none of it was my fault. Apart from my family and Sandra, I’d put it in the top five greatest things that have happened in my life. Absolutely, incredibly wonderful.”
***
Penny Andrews got her diagnosis of Asperger syndrome (though she is perfectly comfortable with the term “autistic”) when she was 30. Back then, she was a regular user of LiveJournal, the social networking site that was a forerunner of Myspace and Facebook, and one of her online contacts had begun to write about the process of finding out he was autistic. “He wrote about it quite openly: all the reasons he’d gone for diagnosis, what the procedure was like, seeing half a dozen different psychiatrists before he found one who would refer him for diagnosis,” she tells me. “And the more he wrote about it, the more I was like, ‘Oh, God, this is me.’”
Andrews is now 35. She also has mild cerebral palsy, which manifests itself in spasms in her ankles, knees and wrists. She is a para-athlete whose specialism is the 100m, and has a punishing training schedule. She wears a vintage Bowie T-shirt, has a wood-cut picture of the Yorkshire town of Whitby tattooed on her right arm, and is a prolific and waspish presence on Twitter. Andrews is currently awaiting a decision on the funding of her PhD, which is focused on the relationships between academic libraries and “data flows, digital labour, academic social networking services and governance in research support”.
At secondary school, boys pretend to fancy you. It kills you, because you take it seriously
She grew up in Nidderdale in the Yorkshire dales and now lives in Leeds. Throughout her childhood, Andrews says she had a deep sense of “everything being wrong, somehow. Being clever and being a supposedly interesting person, but never able to maintain friendships and always, inexplicably, saying something wrong.”
Autism among women and girls is only starting to be properly understood. The male to female ratio of autistic people currently stands at around 5:1, although Baron-Cohen says he and other autism specialists are currently in a “transition period” in their research: the actual figure may eventually turn out to be very different. “There’s a whole new topic researchers are latching on to, about camouflage: whether females – for whatever reason – might be better at hiding their autism,” he says, something that is borne out by Andrews’ recollection of her time at school.
“You’re not supposed to get on with people’s parents better than them when you go round to their houses. I didn’t really want to play with people – I just looked really aloof. I read the diary of Anne Frank when I was six, and I talked about the Holocaust. But I would try to copy other people, how they talked and acted. I’d watch TV programmes that other people watched so I’d have something to talk about. Neighbours and Home And Away.” She laughs. “I got a Tamagotchi when everyone else got them, but I had no interest in it.”
In the end, teenage etiquette and the nastiness that often comes with it proved too much. “Girls are cruel. They exclude each other, and pretend to be friends with each other, as a game. And I get sarcasm, but I don’t get insincerity. And then, at secondary school, boys pretend to fancy you, because that’s the most ludicrous idea they can think of. It kills you because you take it seriously. And they invite you to things, and then they don’t show up, or they’re round the corner laughing. All of that happened.”
Penny Andrews: ‘I would try to copy other people, how they talked and acted.’ Photograph: Rosie Barnes
She has been married to her husband, Emil, for 11 years. “Because he loves me the way I am, I’m completely myself with him.” How hard does she find it to read other people’s emotions? “It sort of depends. If somebody’s actually upset, I can probably feel it quicker than other people. I can feel it too much. But I can’t usually tell if people are trying to get out of a conversation: if people are trying to leave. You have to tell me: ‘We need to stop.’ I can’t tell whether people like me or not, which is hard.”
Plenty of non-autistic people have issues with that, I say, myself included. “But they seem at peace with it. Even with people I’ve known for a long time, I won’t know whether they like me or not unless we’ve had an explicit conversation: ‘Do you actually like me?’ Which turns people off.”
When it comes to understanding autism, how much does she think the world still needs to change? “Quite a lot. Because I think a lot of people still don’t believe it, or think it’s a really mild thing: ‘Well, it just makes it a bit harder for her to make friends, makes her a bit more anxious.’ A lot of the time, it’s stressful. Painful. When the sensory stuff is happening, it’s like you’re being Tasered.” Andrews mentions people flicking their train tickets, or jangling their coins, or whistling. “It’s not just, ‘That’s annoying.’ It’s, ‘That’s unbearable.’ I have said, ‘I’m really sorry, but can you stop doing that?’ But people don’t.”
I have one last question. Self-evidently, Andrews is what some people call “high-functioning”. When she meets autistic people who are, say, non-verbal, does she feel they are part of the same community? “Yes. And I think we have a duty, as people who can speak, to make sure that those people are looked after properly, and they’re not exploited, and they don’t have inappropriate people speaking for them, or saying things like, ‘He’s got a mental age of three.’ How would they know, if they can’t communicate with them? From what I can observe, they are experiencing the same thing as me. When I’ve seen a non-verbal person have a meltdown, it looks like my meltdowns, only more physical. It looks…” She thinks for a minute. “It looks like an unrestrained version of how I sometimes feel.”
***
In Portsmouth, Jon Adams talks about what many autistic people call “passing”: like Andrews’ pretend interest in Australian soaps and techno pets, it’s about managing to blend in, even if that means submerging whole chunks of your personality. In Adams’ case, passing took its toll and, in his late 30s, he hit an emotional wall. “Not being true to yourself has an effect on you,” he says. “I’d been married, and that had failed. I had a girlfriend at the time, and that was failing. I had a bit of a breakdown, and it took me a couple of years to get used to people.”
He started out on a new path as an artist. The work he does ranges across disciplines including sculpture and music, and regularly touches on his own story. Among his most affecting works is a piece called My School Pen: an old-school fountain pen covered in spikes that perfectly evokes his struggles as a child.
You might have imperfections, but the basics of the way you view the world are right for you
In 2007, he was working on a project with a group of teenagers for a charity called the Foyer Federation. “The woman in charge said, ‘Have you ever considered you’re autistic?’” he recalls. “I said, ‘No, what’s that?’” She gave him a copy of Mark Haddon’s novel The Curious Incident Of The Dog In The Night-Time, now almost a set text for people interested in the condition. “And I went away and I read one page and I cried.”
He wells up now. “You might have faults and imperfections, but the basics of the way you view the world are right for you. When everybody tells you, ‘No, you’re thinking wrong’, you know you’re not. But if everyone tells you that, you think you’re faulty. That’s the root of the depression and the low self-confidence. So to read those things on a page was emotional. It was visual. I could see that someone understood. And I thought, ‘OK, maybe I am autistic.’” It would be another six years before he was formally diagnosed.
For most adults who receive a diagnosis, the formal recognition might make belated sense of their lives, but it tends to make little difference to their daily existence. According to the National Autistic Society, 70% of adults say they don’t get the help they need. People might just about recognise the condition’s more extreme manifestations, but as Penny Andrews puts it, “They’re probably not aware of the bulk of autistic adults: people who are sitting there, coping with a lot of stuff, and the fact that they’re dealing with all this noise and stress and uncertainty that they shouldn’t have to.”
Joblessness among autistic adults speaks for itself. Even such mundane things as the ubiquity of piped music, or inadequate signage in public spaces, attest to the same basic issue: a society averting its eyes from things that blight hundreds of thousands of lives and might easily be improved. We fetishise “awareness” of autism, but the point needs to be greater understanding – and then practical action.
Simon Baron-Cohen cites one big frustration: if autism comes down to an often profound difficulty navigating the world, only a tiny number of people currently receive the help they need to do that. “Whether it’s about how to go shopping, or how to go for a job interview, or how to reply to your girlfriend. To me, if we were a civilised society, we’d be paying for mentors. It doesn’t seem unreasonable.”
A government programme called Access To Work means that Adams does get help from a support worker called Donna, a calm and empathic woman who accompanies him to our interview. Donna is copied into all his emails, and in the course of Adams’ work as an artist and a researcher into disability and creativity at Portsmouth University, she regularly shadows him for a couple of hours a day. Among other things, her job is partly to assist him in the kind of reading between the lines that professional and social etiquette demands, but that a lot of autistic people find difficult. Very often, she explains, she is there to suggest that a particular request or instruction is put in a different way, or to remind people in authority that Adams has his own ways of working. “You might have a three-week time span to do a piece of work,” Adams explains, “and if your line manager is checking you each day to find out your progress – well, you might not do anything for two weeks: you might be mulling it over in your head.”
Adams talks a lot about “systemising”, the quintessentially autistic way in which he divines patterns in the world, often immersing himself in them. Music is a good example. He has an app called iMini, which he uses to programme sequences of electronic notes into an on-screen keyboard, which he can then use if a spurt of anxiety means he needs to readjust. He plays me a bit, which I say reminds me of the kind of experimental music that came out of Germany in the 1970s. That’s not a coincidence: “I got really into Tangerine Dream in about 1976 – the repeating sequences were heaven for me,” Adams says. He also likes the electronic pioneers Kraftwerk, which rings loud bells. My son is a Kraftwerk obsessive, and regularly zeroes in on particular segments of their songs and plays them over and over. Does that sound familiar?
“Yes,” Adams says, and his mind goes back to 1978. “I bought Mr Blue Sky by ELO. There was a track on the other side, and it had a very strange beginning. It was called Fire On High, and I’d play it over and over and over again.”
Why? “It aligned me. It made me feel that the world was right and everything was together. It felt like it was part of me. It’s like all the stars lining up.”
He smiles. “Things like that give me the feeling I’m meant to be here.”
A new form of therapy has for the first time been shown to improve the symptoms and behaviour of autistic children, offering a potential breakthrough in care for millions of families.
Six years after parents were trained to better understand and interact with their preschool children, researchers found that the therapy had moderated the behaviour of those who had been severely autistic, unresponsive or unable to speak.
A child who might have run around a supermarket squealing, heedless of their parent, putting objects in their mouth and pushing past shoppers to try to press the buttons at checkout, might instead wait in the queue and even help load the trolley, the research found.
The success of the preschool autism communication trial (Pact) has surprised even the researchers who designed it. There are no drugs to treat the condition, which typically sets in around the age of two, and many families have tried intensive training of their children by therapists, with mixed results. Pact instead trained the parents to help their children.
Prof Jonathan Green at the University of Manchester, who led the study published in the Lancet medical journal, said they had not found the cure for autism, but he and his team believed it had great potential and hoped it would be widely adopted.
“The advantage of this approach over a direct therapist-child intervention is that it has potential to affect the everyday life of the child,” he said. “Our findings are encouraging, as they represent an improvement in the core symptoms of autism previously thought very resistant to change.
“This is not a cure, in the sense that the children who demonstrated improvements will still show remaining symptoms to a variable extent, but it does suggest that working with parents to interact with their children in this way can lead to improvements in symptoms over the long term.”
The trial involved 152 children aged two to four. The families visited a clinic twice a week for six months, where parents were videoed with their children and a box of toys. Autistic children might not interact with their parents at all, but when eventually a child did offer a toy or made a noise that could be interpreted as a request, the incident was rerun on video and the parent encouraged to respond. If the child offered a toy, the parent reciprocated. If the child said a word, the parent repeated it and added something. The practice was repeated at home every day.
The therapy continued with the parents for the next six months with less intensity. At the end of the first year, the researchers could see the children had improved, but the most dramatic development was seen at the follow-up six years later. At the start of the trial, 50% of those in the control group who did not get the therapy and 55% of those who did were assessed as severely autistic. The children in the intervention group, though, got better. The proportion assessed as severe in the control group was 63% by the end of six years, compared with 46% in the intervention group.
Uta Frith, emeritus professor of cognitive development at UCL, said called the study ‘a remarkably positive story’. Photograph: Antonio Zazueta Olmos/Antonio Olmos
Other experts applauded the work. “I can see why these researchers are excited,” said Dorothy Bishop, professor of developmental neuropsychology at the University of Oxford. “These results at follow-up are pretty consistent in showing the benefit of this early intervention for autism across a range of measures. My impression is that this is an intervention that reduces the severity of autistic symptoms, rather than curing autism. Nevertheless, for parents of children with autism, even a modest reduction would be worthwhile.”
Dr Max Davie, of the Royal College of Paediatrics and Child Health, said it offered “a hugely cheering message for families”, while Uta Frith, emeritus professor of cognitive development at University College London, called it “a remarkably positive story, because the intervention itself was neither intensive nor invasive”.
The absence of any hope, as well as the very sudden regression in children’s behaviour, led many parents to believe in the discredited theory of Andrew Wakefield that the MMR (measles, mumps and rubella) vaccine was the cause of autism.
“Parents commonly tell us that they fight for a diagnosis but, when they finally get itthe cupboard is bare, with little information or tailored support available to them,” said Dr James Cusack, director of science at the charity Autistica. “Too often, parents fall victim to the false claims of charlatans who prey on desperate families. These results look promising for the many thousands of parents who want to find early interventions for their children based on solid science.”
The researchers said children’s communication with their parents was improved at the end of the six years. The parents said there were also improvements in relations with other children, in social communication and in repetitive behaviours. But there was no change in child anxiety, challenging behaviours or depression in the autistic children and they would still need a lot of support while growing up.
About 1% of children and young people are affected by autistic spectrum disorder, which ranges from mild to severe. The lifetime costs to the UK, which include health, social care and education costs as well as productivity losses, are estimated at £1m to £1.5m per child and between $ 1.4m and $ 2.4m in the United States.
A novel told from the point of view of a teenage girl with autism, written by schoolgirls with autism, has been published after the students – frustrated by their experience of a world that rejects and ignores them – decided to take matters into their own hands.
The pupils at Limpsfield Grange school, the country’s only state-funded residential school for girls with special needs, mined their own most painful – and uplifting – experiences to write M in the Middle, a young adult novel created with the help of their creative writing teacher, Vicky Martin.
“If society just realised the very simple fact that girls can have autism as well as boys, then the life of girls with autism would instantly be so much better because we wouldn’t be so scared of being labelled as weird, abnormal and strange,” said Francesca Warren, 14, one of the 70 girls at the school.
“Because people think autism is something only boys have – and because girls with autism behave completely differently to boys – girls have to constantly mask their condition,” Warren added. “But having to pretend to be someone else is debilitating and humiliating. And it doesn’t even work: people can get annoyed with you even when you mask [because they sense your inauthenticity].”
Warren sits with her friends in the office of Sarah Wild, the headteacher at Limpsfield Grange. Fizzing with as many different opinions as any other group of teenage girls, they only speak with one voice when it comes to the question of whether boys with autism have an easier life.
“Yes. Yes. Yes!” they shout in passionate union. “Ding. Ding!” whooped one girl, for added emphasis.
The hilarity quickly ebbed away. “I’m prey in a world of predators,” said 12-year-old Lauren Mittelmeier, quietly. “Life is really hard for girls with autism. Why is life so difficult?”
The struggle to get their condition recognised is just the start of the battle for girls with autism. Even when girls are diagnosed, their life doesn’t necessarily get any easier: there is virtually no specialist support, academic or otherwise, for girls.
Mittelmeier’s parents moved home from Dorset so their daughter could attend Limpsfield Grange school, in Oxted, Surrey. This is not unusual: another family moved from Cornwall. One other girl boards during the week and travels the 250 miles back to her home every weekend.
Mittelmeier said: “I was diagnosed at eight but my autism wasn’t acknowledged by my school. They just thought I was an idiot. They were trained to work with autistic people but I’m guessing it was boys they were trained for, not girls.”
There is no official data on autism diagnoses, although the National Autistic Society (NAS) is calling for local authorities to start collecting it, as well as ending the “autism diagnosis crisis” that sees children waiting for nine years and more for a diagnosis.
Statistics appear to show that more men and boys than women and girls have a diagnosis of autism. The study most quoted, written by Leo Kanner in 1943, found there were four times as many boys as girls. In later years, various studies, together with anecdotal evidence, put the men to women ratio at anything from 2:1 to 16:1.
But Sarah Wild, head of Limpsfield Grange, believes there are just as many girls with autism as there are boys.
She said: “I genuinely think there are equal numbers but the stereotype that it’s a male condition is self-perpetuating: the diagnostic checklists and tests have been developed for boys and men, while girls and women present completely differently.”
According to the NAS 2012 survey of 8,000 people with autism, just 8% of girls with Asperger syndrome were diagnosed before six years old, compared to 25% of boys. Only 21% of girls with Asperger’s were diagnosed by the age of 11, compared to 52% of boys. Many adult women who took part in the survey didn’t have a diagnosis at all: 10% compared to 5% of males.
An added problem facing girls and women with autism is that if their true condition isn’t identified, they are at risk of being misdiagnosed, said Wild. “If, for example, a clinician asks a girl with autism if she ‘hears voices’ or ‘sees people’, she’ll say ‘Yes’ because she’s being entirely literal – and then she’ll be misdiagnosed with schizophrenia or another mental health disorders,” she said.
The NAS survey suggests that 42% of females have been misdiagnosed, compared with 30% of males. Many women remain undiagnosed well into late adulthood until they self-diagnose: females in the NAS survey were more likely to have paid for their diagnosis (14% of females, compared with 9% of males).
Misdiagnosis and no diagnosis, as well as a lack of support, understanding and recognition once a correct diagnosis has been made, leave girls and women in a dangerous space. According to the NAS survey, 38% of females with Asperger’s have another serious mental health condition, including eating disorders and depression.
But momentum for change is starting to gather pace: in January, the National Association of Headteachers is holding a girls on the autism spectrum conference to prepare a call for action on the issue.
Before that, on 8 November, there is a private House of Lords roundtable organised by the autism and girls forum – itself set up just 18 months ago.
“We set up the forum because there is so much energy coming forward now from parents, academics, children and young people’s mental health services (Camhs), and teachers, that we’re missing identifying this group of girls,” said Professor Barry Carpenter, chair of the forum.
“The pattern we’re seeing is that these girls come badly unstuck in their teenage years. They manage to mask it when they’re younger, which means when they crumble, they don’t have any coping strategies and structures to fall back on for support,” he said.
The House of Lords roundtable has a quest, said Carpenter: “We need to engage political will, without which nothing will change. There needs to be a systematic review, either under the women and equalities committee or we need to set up a new, cross-governmental task force.
“We need to harness all this evidence coming to us and marshall it to incentivise more research, more help for schools and Camhs.
“We have a very vulnerable group of girls here,” he said. “I can’t personally live with the fact we’re not doing nearly enough to help them.”
M in the Middle is published by Jessica Kingsley Publications (£8.99). Click here to buy a copy for £7.37
