People who are diagnosed as autistic – to a greater or lesser degree – find it difficult or impossible to perceive the thoughts and feelings of others, often having restricted, repetitive, almost ritualistic ways of behaving. The extent of these problems varies in both their manner of expression and their severity, so people are on a spectrum, with extreme and pervasive autism at one end and mild and infrequent signs of it at the other.
For years, many parents may have been feeling that their child is odd or not quite ‘all there’ because he makes strange comments and shows a startling unawareness of the feelings of others. When the doctors tell them this is a recognized condition, it’s a relief, as is the news that the diagnosis brings with it a great deal of practical, material support from an army of educational and clinical experts.
There has been a gradual extension of the autism concept to include increasing numbers of children on the spectrum. Doctors usually explain to the parents that the cause is wholly or largely genetic. Whilst it is possible that in extreme cases this is indeed true, in many others it may not be so simple. The possible problem with parents taking the view that genes explain autism is that they believe they can do nothing to change the situation. If it’s purely genetic, then you can no more change the colour of your child’s eyes than his autism.
My suspicion is that a proportion of what is currently being diagnosed as genetic is only partly so or, in some cases, is not genetic at all. The story that follows shows how important that can be, because if your child is only mildly autistic, it is possible that Love Bombing could make a big difference.
Sara, 8, has a much younger sister, Geraldine, aged 2. Her mother, Gemma, suffers from epilepsy; she is married to a very supportive husband. Gemma is a perceptive observer of human foibles and has pursued every avenue to help her daughter. In fact, this case is a landmark in the use of the LB method, in that she has now done five weekends away with her daughter. Without prompting, Gemma devised new ways and extended applications that have greatly helped her daughter and call into question much of the received wisdom regarding how best to conceive of the causes and treatment of Sara’s problems. Although the first LB weekend had only limited success, 18 months later four subsequent ones have achieved remarkable improvements.
Sara has recently received a diagnosis of Asperger’s syndrome (a mild form of autism). Gemma describes Sara as ‘incredibly bright, but she doesn’t pick up other people’s signals. Unless I am standing right in front of her shouting, she will not “get” what I am trying to convey, emotionally.’ She also has obsessions. After leaving a swimming pool, it takes a long time for Sara to change out of her costume, shower, dress and dry her hair, because she has a lot of fixed patterns she is compelled to go through. On one occasion, Gemma asked her to be faster than usual because her husband had ’phoned and there was an emergency at home. Her younger sister wanted her mother, and her father was getting upset, but Sara could not understand why. Gemma explained that having a 2-year-old daughter crying can make parents unhappy, but Sara simply could not grasp why that might be upsetting her Dad. As Gemma put it, ‘Sara exists in her own little bubble.’ She dislikes groups. At a disco, she will act independently, not ‘take part’. Recently, she burst into tears after school and said, ‘We had to do something in a team: I can’t do teams.’ In the playground she will be hovering on the edge of a group, wanting to be part of it, but then barge in and take over without picking up the subtle rules of the game or of cooperative activity.
When playing alone with friends, it is the same. If things do not go according to her plan, she finds it intolerable and has a meltdown. For example, a little girl came round recently and was not doing exactly as Sara desired with a jungle toy. Sara started off by screaming at her ‘You’ve got to do it like this!” The girl explained she wanted to do it differently from that, and Sara stormed out in floods of tears. She recently moved up to the junior school and has not found it easy, thumping her best friend in the stomach. Reports Gemma, ‘Sara was sent for detention in a room on her own. When she got home I asked if the detention was upsetting, and she said, “It was brilliant, I got a room all on my own, they left me alone, I could do what I wanted.” That was her idea of heaven.’
Over the past year, Sara has become aware that she is different from other children, that she does not fit in, and it has begun to upset her. She is easily overwhelmed by almost any demand and spends much of her waking life feeling stressed. Gemma regrets that she reacts ‘appallingly’ to this short-fused and angry daughter. ‘I get upset and furious myself. We live in a chaotic family. There’s a lot of love and fun, but it’s a loud, shouty environment.’
Sara has never been fully toilet-trained. Her knickers are damp by the end of most days. At least once a week, she has a major accident. Gemma sees her wiggling and fidgeting, clearly in need of a visit to the toilet but refusing suggestions that she go. A few minutes later, she wets herself. Gemma says, ‘She withholds and wets whether you nag her or not, I’ve tried everything.’
Sara resists almost all requests to do things she dislikes. She is particularly put out by more than one demand simultaneously, such as to brush her hair as well as her teeth. Says Gemma, ‘That will throw her completely. If not nipped in the bud, it leads rapidly to floods of tears, lying on the floor kicking and screaming: A temper tantrum, like you see in a toddler.’
Gemma says, ‘We do have Asperger’s in my husband’s side of the family. We have thought that what we have here may be a very low level of the illness.’ The implication was that the problem might have been passed down through genes. But it is very important to bear in mind that, just because a trait runs in families, that does not prove it is genetic. It is just as possible that the trait is passed down through learning or imitation or maltreatment, although in the case of real autism that is much less common – it may well be the most heritable of disorders. Nonetheless, some kinds of what is called Asperger’s (as opposed to full autism) may not be caused by genes at all.
Gemma has had trouble persuading Sara’s teachers that there is a problem. ‘Because she doesn’t throw chairs through windows at school and does well academically, I get a lot of “Don’t worry, she’s fine.” They mean, “Go away, overprotective mother!”’
However, she has managed to persuade the child mental health team that Sara needs help. ‘There is a huge gap between her intellect and emotion. I’ve said that, on the one hand, she is so intelligent that I am parenting a nigh-on teenager, but emotionally I have a 2-year-old, and there’s very little between them. They said they would put her emotionally at 3–4, which was reassuring.’
At the point when she contacted me, Gemma was despairing. ‘I really don’t think things are right. She’s not happy, and neither are we. I hate to admit it, but I have reached the stage where I brace myself when she is coming home or even into the room. I’ve been feeling we need a totally fresh start. Do we need to move house, school? New balls, please!’
In discussing Sara before the weekend, Gemma and I considered two very different ways of regarding her problems and the potential efficacy of LB.
The first was to regard Sara as suffering from a genetically inherited brain deficit that limits her capacity to understand that other people have thoughts and feelings. Her difficulties with other children and in relating to her family would be a consequence of this disability (or difference from the norm, as some regard it). In this model – which is the one favoured by the medical establishment – whilst LB could help to reduce Sara’s reactivity, by making her feel loved and in control, it could not be expected to change the fundamental cause of the problem.
On the other hand, it was possible that Sara has little or no genetic disposition to have these problems, that she is suffering from severe anxiety about relationships caused by her experience in the womb and beyond, making her too insecure to be able to cope with them. Whilst her experiences could have been the reason for parts of her brain to be underdeveloped or caused her to have patterns of brain chemicals and brainwaves different from other children, the cause would be different – not unchangeable genes – and the potential for improvement greater, given the plasticity of the brain. In this model, being given control and shown constant unconditional love might help to reset her emotional thermostat. She would be regarded as someone who regressed into a toddler when faced with stress or frustration. Whilst LB might not instantly change the degree of Sara’s anger at frustration, it might help to foster a more harmonious relationship with Gemma which, over time, could produce fundamental change.
Regarding the LB, Gemma raised a simple issue at the outset, which is that Sara is made uncomfortable by displays of affection. She said, ‘Sometimes Sara seems a bit surprised if I embrace her. She responds, but it seems like a learnt response. Other times, like if I ruffle her hair, she barks, “What the hell did you do that for?” If it’s on her terms, it’s fine; she objects when it’s not expected or asked for by her.’ The important thing was that Gemma did not express the love in a way that seemed intrusive.
It’s not as if Sara never hugs her mother. ‘Sometimes she will cling, she will go over the top, saying, “I love you I love you”, and then hugging so tight that it’s uncomfortable. She’s almost forcing me to stop it. It’s as if she is squeezing an object too hard, as though she does not realize I could feel pain.’ This is reminiscent of a pattern of insecurity known as clinging-resistant attachment, in which the child will allow himself to be hugged or seek embraces, but, once in proximity, he wriggles or lies limp or is stiff as a board, simultaneously being close to and repelling the other person. Before the weekend, therefore, Gemma told Sara she would like to show a lot of love during the trip but that she understood she does not like that too much, so she would try and do it only when Sara wanted it.
Our hope was that feeling in control would enable Sara to feel more able to give and receive love. As Gemma put it, ‘If you let her have control, she does feel more loved. If you stop her doing what she wants, she feels it as a personal attack.’
Another concern was how to deal with a temper tantrum. If Sara said she just wanted to be left alone, as she tends to at such times, what should Gemma do? The answer was to just leave her be.
Sara was excited by the idea of the weekend. She asked specifically for a hotel room with a bath, so they can bathe together. She also wanted access to a swimming pool, as she loves holding on to Gemma in the shallow end, having close proximity.
At first, Sara asked to be taken to Legoland. Gemma suspected that this was a way of testing out how sincere she was being in saying that Sara could choose what they did – she knows that Gemma dislikes theme parks. Once Gemma indicated that she was open to the idea, Sara said, ‘Actually, I just want to spend some time with you because I don’t think I know you very well.’ Gemma wondered if she was putting it like that because she had heard someone on television say something similar, but it also seemed like a glimmer of hope. As Gemma pointed out, ‘In order for her to test me, she must know of my existence and feelings, likewise if she changes a plan with a view to it affecting me. So maybe that was a sign that Asperger’s is not her fundamental problem: she does know I have feelings?’
Most of what Sara planned entailed staying in their room and doing face packs or ‘girly things’: bathing, sitting around and washing hair, shopping and buying girly toys. They were ‘together things, rather than on her own’. To promote this, Gemma purchased new pyjamas, new face packs, new shampoo, and she agreed to a plan to buy an outfit and a teddy. Gemma said beforehand, ‘I am really, really looking forward to it, and then every so often I go into blind panic: “I’m going to mess it up, I’m going to mess it up.”’ She realized that the more that they could just enjoy the experience and take that home, the more it could become something that changed the trajectory of the relationship.
Finally, Sara found it hard to settle on a single name for the LB. She used Mummy Time, Girly Time, Us Time, Fun Time and Special Time. Of these, Girly Time turned out to be the most consistently employed beforehand.
When they first arrived at the hotel shortly after lunch, Gemma reiterated that this weekend was a chance for lots of hugs and love but stressed that this was up to Sara, it was her job to decide when and how much. Sara seemed ‘quite chuffed’ with that and gave her ‘a sideways hug, but not full-on’.
Gemma was expecting Sara to be nervous and wanting to get everything straight in her head by looking round the hotel. However, Sara would not leave the room, even though she knew there was a swimming pool that she had said she was longing to see.
Sara was very excited about having a television in their bedroom. She spent a lot of the time watching it, immediately settling down with a hot chocolate from the minibar. She was so thrilled by this arrangement that she was watching things she had already seen. At this point she said she did not want to leave the room at all for the rest of the day.
She had filled a suitcase with the tiny toys and knick-knacks she loves, a menagerie of small objects constantly at her beck and call. Two of them had been Gemma’s when she was a child, and the first thing Sara did on opening her suitcase was to say, ‘These are for you.’ She wanted her mother to have them. Said Gemma, ‘I welled up. I don’t know if this was planned or spontaneous, but it was so, so lovely for her to be considering me.’
They settled down for a manicure session while Sara watched the telly, taking up a couple of hours. Reported Gemma, ‘Normally she hates having anything done to her, whether that be nails cut or hair brushed, but she was completely happy for me to file her nails down and paint them. However, when I said, “Would you like a hand massage with this cream?”, although the words coming out of her mouth were “this is lovely”, her hands were moving backwards all the time, and I was having to move further and further across the table towards her. That sums up a lot of her responses to things. She wants to pull away but overrides that with her intellect.’ It is also typical of the push–pull pattern of clinging-resistant insecurity.
After this, Gemma reminded Sara that she had wanted to go swimming, suspecting she was putting it off because she had some irrational fears. Eventually, Sara admitted she was worried the pool would be too deep, and also that on the way there she might end up accidentally walking into somebody’s room. Having flushed this out, they turned off the telly and went to look at the pool. They talked about how she found it hard to move from one thing to another. Sometimes she finds it difficult to do something even though she wants to. Gemma realized that she may be underestimating the extent to which Sara is impeded by irrational fears that secretly beset her, rather than an inherent lack of empathy for others – she is too worried about herself to take others into account.
Having reached the pool, Sara decided to give it a go. Said Gemma, ‘She really, really had a great time, hanging on to me as I walked around, happy to have that contact in a way she wouldn’t usually if we weren’t in the water. Her confidence grew enormously.’ What was more, when the end came, it was painless. ‘I was in the throes of what turned out to be bronchitis, so not keen on being in there too long, feeling ghastly. I had warned her we would have to get out because a swimming lesson was starting, and it was amazing, there was no problem. We met each other half-way. She picked a random time when we would get out, and there was no tantrum.’
Once out, when Gemma wanted to go into the steam room for a quick blast to clear her clogged chest, Sara would not allow it because she would be on her own. In the end, after a surprisingly calm negotiation without a tantrum, Sara let her go in and stood at the doorway. In doing this, there was an acknowledgement of Gemma having a need, something almost unprecedented, like the gift of the small toys when they had opened her suitcase in the room.
On returning to the room, Sara was jiggling around on the bed, obviously dying to go to the loo. Gemma just looked at her, with no gesture, and Sara said, ‘Okay, I’ll go.’ Gemma was amazed that Sara had read her thoughts, as it proved that she is capable of positing that another person has thoughts and then correctly intuiting what those are. If she was missing the part of the brain that enables intuition, or if it was damaged, that would simply not be possible. In the same way that a computer without software such as Skype or Word cannot provide their functions, so it would have been with Sara’s brain and intuition: she must have a part of the brain that can ‘do’ intuition for this to have happened.
Rather, her erratic capacity for intuition is more reminiscent of a small child’s: they also are inconsistent in how sensitive they can be to what others are feeling and thinking, varying according to their current emotional state and how cognitively advanced they are. Sara’s incontinence is another way in which she resembles a toddler, along with the temper tantrums and the irrational fears.
After the visit to the loo, Sara said, ‘I’m not going out of the room now.’ Its newness was exciting, she said, and having her things with her and the familiar TV programmes made it feel ‘very good’.
It was supper time. Food is a vexed issue, Sara is very particular (again, like a small child), and she was worrying that there would not be anything she wanted if they went to the restaurant. They ordered chips and ice cream from room service. She wanted Gemma to order an extra portion of chips but to say that they were for her. She was embarrassed about her eating habits, something that came up at every mealtime. This weekend was the first time Gemma had known her to be self-conscious about feeling odd or different. It showed a new awareness of how others might see her, and that she was on their ‘radar’ at all.
When Gemma raised this, Sara said, ‘Stop talking about things that worry me: some things are private and I will never tell you.’ In some ways, one could understand why Sara might have felt that Gemma was being over-inquisitive. Throughout the weekend, although very well-intentioned, Gemma found it hard to just get on with enjoying it and was periodically speaking with Sara as if this were therapy, which is very much not the idea in LB. When Sara said there were ‘private things’, Gemma said it panicked her, perhaps worrying that some kind of abusive activity might be being hidden: ‘Huge alarm bells were ringing.’ At the same time, Gemma was very aware that this was remarkably similar to what had happened with her own mother. She said that ‘As a child I was always told to tell my mother everything, not hold things back. I don’t want Sara to have that feeling, guilty at not telling me everything.’
Despite all this psychologizing, they had a lovely supper, then a little chat, then Sara wanted to play on Gemma’s computer. She is very keen on screens of all kinds.
She was hugging Gemma a lot more than usual. When they had supper on the bed, she came and sat next to her. At bedtime, she got into her pyjamas without the normal conflict, telling Gemma she loved her. Sara initially snuggled for a few minutes before moving to her side and going to sleep. This physical intimacy increased as the weekend went on. Says Gemma, ‘On the second day there more hugs, she had settled into it. She seemed much calmer. The control had given her a feeling of safety, she was less panicky. It meant she felt more able to give and receive love.’
After a good night’s sleep, Sara got straight into watching television. Gemma had to insist they set off downstairs because it was too late for room service, and they needed some breakfast. Sara was relaxed about this, less stroppy than usual.
Once there, Sara ate what she wanted and then just wanted to leave the table (again, very like a small child). She had difficulty in understanding that it would be companionable to wait until Gemma had finished. She finds it hard to understand the social dimension of meals. To Sara, the goal of the morning was to set off to the toyshop to buy a build-a-bear toy. Delaying this pleasure did not make sense to her, just as it would not have done to a 3-year-old who was longing to get something she wanted.
Waiting at the bus stop, they played some games. Sara likes Gemma to tell her stories (as do 3-year-olds), so she did a ‘bus’ one and one about their time away together. At the shop, Sara was very focused on getting the build-a-bear kit, and as soon as it was settled she did not want to hang around. On the way back to the bus stop, Gemma had to buy something, and they also bought Sara a soft blanket to wrap herself in as a memento, talking about how it could be ‘like a hug’. When they got back to the hotel, they put a squirt of their special perfume on it. Sara has still got it on her bed today and uses it every night. Says Gemma, ‘It works really, really nicely. When things have been a bit tricky, she retreats with her blanket. It’s been a good reminder.’
It had always been Sara’s plan to buy the bear to look after, and, back at the hotel, she wanted to dress it. At night-time she wanted to undress it and put it to bed. She has always liked the dressing and undressing of dollies and soft toys, but not the parenting. Sara’s younger sister will sit and chat to her dollies, explaining things, chastising if naughty. In contrast, Sara does the practical stuff, like feeding and dressing, but she does not speak with them or communicate as if the doll or bear is a person like her.
They went swimming, although by now Gemma was feeling very ill. Sara enjoyed practising different swimming strokes, but she was also being rude and pushing the boundaries. Gemma managed to make it playful and provided physical contact, and Sara became less defiant and offensive. However, Gemma had to cut the swimming short because she was feeling so ill. Sara allowed her a brief period in the steam room.
During the evening, Sara behaved ‘a little bit like a spoilt brat’. For example, Gemma asked her to pass her the folder with the hotel information, and she refused. Gemma recalls that ‘eventually she threw it at me, landing on my leg, painful. She burst out laughing. Me having needs wasn’t in the equation. I explained that being rude and unkind wasn’t acceptable even during LB; she could choose what to do but not like that. She apologized, but it was not because she was sorry, just a going through the motions.’
Soon afterwards they had a meltdown over the computer. Sara had gone to the build-a-bear website, but it did not work as she wanted. She was bashing the laptop quite hard in frustration. However, Gemma was surprised to be able to recover the situation. ‘Initially I just said, “come here”, and gave her a hug, which worked – usually it wouldn’t, would be the worst thing to do. So we moved away from the computer and turned it off. I told her stories of trouble with computers, like writing essays at Uni that got wiped, how they never do what they are meant to, how annoying they are, and we had a good laugh. I suggested we have some food as a means of stepping away. What came next was fascinating.’
‘Firstly, she said, “I want a cuddle”, then she wrapped herself in her blanket and, using baby talk, cuddled up and was very sweet: “Me love you Mummy”, “me want cuddles”. That moment of temper had allowed us to shoot straight through to the heart of it all. It was quite amazing, she was able to be a toddler again. So we watched telly, ate our food and had a delightful evening.’ This seems to have been a truly therapeutic period of full regression to being a toddler, but instead of temper tantrums, Sara became a small child who just wanted to love and be loved. This is not as strange as it may seem: it is a need we can still have as adults. For instance, many couples use baby language or childlike words and manners of expression in their most intimate exchanges.
The next day at breakfast Sara still had no concept of waiting for Gemma to finish before leaving. They watched television afterwards, and as they were going to have to leave, Gemma asked if she wanted a last hug. She refused at first, but after a little while she came over to have one on the bed. Gemma asked if she had had a nice time, and Sara said she wished there had been more children of her own age.
They checked out and went for a last swim. There she met another little girl whom she dominated somewhat less than is usually the case when Sara plays. When she met the girl, she greeted her like a long-lost friend: ‘Hellooooo.’ Recalls Gemma, ‘For the first time I have ever seen in her life, she actually asked this girl her name, though admittedly only after about 15 minutes. She would still talk over the girl when she was trying to speak, insisting they do what she wanted when choosing games. Luckily, the girl seemed more mature and quite happy to go along with an overexcited, slightly wacky playmate. Sara didn’t meet any of the resistance which is what tends to lead to stroppiness. There was the occasional wry smile from the girl indicating “this child’s a bit odd”. They had a lovely time.’
While this was going on, Gemma was allowed into the steam room. They waved to each other occasionally.
However, with the end in sight, Sara became increasingly troubled. She threw a full-on, screaming tantrum when Gemma washed her hair after the swim, even though the new friend was just outside the shower cubicle.
Gemma’s husband was collecting them and was held up in traffic. Waiting in reception, Sara was anxious about whether the bags were safe with the porter and, in particular, if the bear was alright. She was getting quite panicky, then rude and cross and impatient. Gemma suggested they get the teddy, and she calmed down a little bit. They talked about what had been the best bits, and Sara listed them in order: the swimming, her new friend and the bear.
When her father arrived, there was huge panic about getting the bags and then an enormous tantrum getting into the car. Sara was expecting a DVD player for her to watch on the journey home, but at first it did not work. Her sister was incredibly friendly, but Sara largely ignored her. At one point she did offer the bear to her sister, but ‘that was just to shut her up’. She stayed glued to the DVD all the way home.
The Top-Ups were done every day for the first few weeks afterwards, but whenever they could be fitted in rather than always in the evening. To begin with, nearly always all Sara wanted was to watch telly. Gemma would be sent out to get food and was sometimes allowed to sit next to Sara with her arm around her, but with not much interaction. A day arrived when it could not be done; Gemma asked if Sara liked the time together, being told ‘It’s okay’, but it was clear it had none of the special charge of the LB weekend. It had become just like any other time with her mother.
The reminders of the weekend, like the blanket, could still work to recreate a better state. One time she was having a meltdown about homework, and Gemma said, ‘Let’s get this done and then we can have our Mummy Time’, and it worked like a magic button. However, for the Top-Ups to work, Gemma suspected they would need longer periods together, away from the family. It is also possible that the lack of a regular time for them reduced their impact.
Whilst there had been some marked changes for the better, there was no respite from the tantrums and anger attacks.
Recalled Gemma about the days after they got home: ‘The come-down was really foul. I was expecting adjustment issues, but I had flat refusal and rebellion over everything. A week ago she threw a monster tantrum, screaming, trying to kick down a glass door, which lasted from 3.45 to 7.30 p.m. I ended up putting her in the garden, it was so difficult. I am still finding it hard to get back from. I almost felt a line was crossed. This was relentless, so she is still flying off the handle.’
In other departments of her life, she had been a little less tolerant of her sister. There had been no reports of any changes of behaviour at school. She seemed to come home ‘reasonably happy’.
On the positive side, Gemma said, ‘She has been more loving, there has been more affection towards me. When things have gone wrong, I have been able to use the LB bond as something to refer back to. When snuggling up at the end of a difficult day, I can refer to it, and it’s a bedrock for both of us that wasn’t there before. It’s a really golden experience that we can recall, which is invaluable. It underpins and supports us every day. She uses her blanket every night to comfort herself.’
Interestingly, there had been a dramatic improvement in her continence: much less wetting. Before the LB weekend, most days her knickers or tights would be damp, with a deluge every week or so. Since the weekend, she has only been damp once in three weeks and there has been only one deluge.
Gemma had also noticed recently she had been a bit better at cooperating with other children. She did not seem to need to dominate to the same degree.
Our conclusion at this point regarding the nature of Sara’s problems was that she is severely anxious. Much more than Gemma had realized, Sara is plagued by irrational fears, particularly filled with concerns about how she will seem to others, such as regarding her eating habits. This is ironic, in that she also is frequently unaware of the feelings and thoughts of others. However, there were enough examples during the course of the weekend of Sara being empathic to Gemma for us to rule out the idea that she has an irrevocable, genetically caused brain disorder. When feeling in control and loved, she was able to show affection appropriately and sensitively to her mother, something it would be impossible to do if she lacked specific components of the brain for doing that. That does not mean her brain is like other children’s: it is highly likely that some parts of it are underdeveloped and that she has some patterns of brain chemistry and brainwaves which are different.
Sara regresses to the behaviour of a toddler when faced by stresses that most girls of her age can tolerate. She becomes unable to be kept waiting, she needs what she wants immediately. If thwarted, she is unable to use words and ideas to deal with the feelings, swamped by frustration giving rise to aggression, resulting in temper tantrums. Exactly like a toddler, too, she finds it hard to cooperate with peers, tending to want to have things all her own way. This is completely normal in a 2-year-old. The average 18-month-old tries to grab a toy from another eight times an hour; a year later this will still happen three times an hour. Finally, just like a toddler, she is liable to be incontinent.
However, it was of particular interest that this latter problem, the incontinence, was almost cured by the LB. Whilst the tantrums are as bad as ever, there is also a much greater capacity to give and receive love. Her blanket provides a self-soothing device used by many toddlers and babies but not uncommonly resorted to by 8-year-olds when they are feeling lonely or sad. It proves useful to Sara as a bridge out of toddlerdom.
As mentioned at the outset, Gemma is unusually able and willing to seek solutions for Sara’s troubles. When I spoke to her again 18 months after the LB weekend, with Sara now about to have her 10th birthday, she had evolved the LB method and had produced substantial changes in Sara, herself and their relationship.
Gemma described developing two levels of LB. There is the Ongoing Maintenance Dose, a few hours away from the family at least once a week, a sort of Top-Up Plus. This might entail a three-hour trip into town, a meal out together (Gemma is still very preoccupied by food) or other planned periods doing whatever Sara wants. In contrast, The Treatment level entails a whole weekend away, taken during the school holidays, money and time allowing: since the first one, they have managed no fewer than four in the last 18 months, always for two nights. The Treatment weekends were dubbed Special Time Away by Sara; the Maintenance periods are Special Time.
The weekends are always at the hotel where they went for the first LB weekend. Because of the frequency, Gemma managed to get a special deal with the hotel. They always have the same room, and they do the manicure. This activity has become firmly anchored as an emblem of the first weekend, whether at the hotel or at home, along with the blanket, teddy and new pyjamas they bought for it. At the hotel, they watch the very same television, sitting in the same places in the room. They go out to eat at the same place, where Sara chooses the same dishes. Because it’s the holidays, sometimes it’s even repeats of the same TV programmes that are being shown as she saw on the first weekend.
Sara adores the predictability and the feeling that she is returning to the same place and experience as the first weekend. No settling-in period is required: she knows exactly what she is going to get. She takes the blanket she obtained at the first LB with her everywhere, including for the weekends. The only innovation is that, when they go into the town, instead of shops they now always go to the local zoo, visiting specific animals and sections. They buy a soft toy there as the memento for each weekend.
Gemma describes the weekends as ‘a very, very powerful tool’. During the period between them, Sara’s behaviour tends to get a little worse, until Gemma spots it and they start planning the next one. Immediately, Sara picks up, and they are set on a better trajectory. They still go through the same process of asking, ‘What do you want to do?’ even though this is already decided, invariant. Despite the predictability of the plans, thinking herself forward into it, picturing it, seems to almost trigger the experience of it happening. Even if they have to tweak dates and alter plans, Sara can cope with that, knowing it is coming. When getting close to meltdowns or becoming tense in the period between LB weekends, just being reminded that there are good times, specifics of time at the weekends, will calm her. The space in the few weeks either side of the weekends has become a haven, along with the weekends themselves. Interestingly, the adjustment back to normal family life on returning – like the process of settling in when arriving – has become much easier; it is all part of a general trend for Sara to cope better with transitions.
One of the bonuses of the weekends is that they have instituted Special Time With Daddy for Sara’s younger sister. The bond between those two is vastly stronger, an accidental by-product of the plan.
The two-level Maintenance and Treatment LBs seem to have produced lasting change in Sara. The most startling is that there has been a steady and significant decrease in the ‘meltdown’ toddler tantrum-like anger attacks. Whereas these were unaffected by the initial LB weekend, the two-level programme is gradually diminishing them. Gemma reports that ‘after the first LB weekend, no day passed without a major altercation, and full nuclear meltdowns happened at least four times a week. Today, there are a maximum of two meltdowns a week, with some kind of minor “set-to” still occurring on most days. The severity of the meltdowns has decreased. The “screaming abdabs on the floor” kind are down to fortnightly occurrences.’
That the meltdowns do still occur twice weekly shows that there is still a considerable problem, but from Gemma’s point of view it is a huge step in the right direction because she was beginning to feel desperate and tyrannized until the change. She says, ‘We do still have meltdowns, but we have come a very long way from where we were after the first LB weekend. I can directly relate the number and severity of the meltdowns to how long it is since we last had an LB weekend. I regard that as hard evidence that the LB does have a significant and enduring effect, which wears off unless repeated.’
If Sara’s brain chemicals and brainwaves had been measured from before the LB ever began, it is highly probable that considerable changes would be found – for example, in her cortisol levels. That the meltdowns have gradually become fewer and less extreme, a cumulative change, will almost certainly be reflected in Sara’s brain. It is even possible that some parts of her brain that were undeveloped will have increased in size. This could be expressed in her greater stability and reduced emotional reactivity, such as in dealing with transitions. For example, the family moved house, and Sara moved schools as well. She was not someone who likes change, even small transitions, like from watching television to going to bed. Gemma observes that ‘Moving both house and school would have completely thrown her in the past. We were expecting Armageddon, horrific scenes, but they never happened. She struggled, yes, but it was manageable by her. These moves have gone well, really well.’
The dramatic improvement in Sara’s continence that followed the first LB weekend has been sustained. Over the 18 months there has been a steady improvement. Whereas she used to be wet all day for much of the day, now this is only true once a week at most.
Gemma partly attributes the greater continence to increased consciousness of what other people think. Before Sara started at her new school, ‘She couldn’t care less if people knew she had the problem. Now she does.’ The LB has promoted a greater awareness of others. Gemma says, ‘Now, she sometimes grasps that someone else’s experience might be different from hers. She can see that clearest if she is discussing other people’s social predicaments. For example, if her sister tells a story about her school friends, Sara can offer reasonable ideas about what their motives might be, like that X is being nice about Y because she is Z’s best friend. She would find that harder for herself, although she’s better at it. But she still will tell stories without realizing what her audience know, such as mentioning people who they could not possibly have heard of, oblivious to the confusion that might cause.’
The degree of unawareness is not random, however. Gemma believes it relates to Sara’s emotional state. ‘The LB has enabled her to have much more self-awareness, possibly because she is less anxious. So if we are going to have time together, she will say, “I need you to tell me that that is what is happening so I can remember it” – she realizes she has a deficit in awareness and then is able to tell me. The instruction in the protocol you give to parents preparing for LB to strongly headline to the child that something special is going to happen and that it is going occur at a particular time is especially helpful to Sara.’
There is still a habitual unawareness of others in Sara. Gemma says, ‘She will chat freely with someone we meet in the street, and afterwards I will ask, “Who was that?”, and she’ll say, “I don’t know.” She works differently. She has had a successful interaction and got something out of it. But she does still very much live in a bubble.’
It seems, nonetheless, to be an increasingly permeable bubble. As Gemma reports: ‘She does have a much greater awareness of others’ judgements. She said to me that the children at her school don’t know who she really is, which amazed me: that she could appreciate we show different sides of ourselves to different people. She realized that if she showed some sides of herself, they would not like her. That showed much greater awareness than I have given her credit for. But then she cannot be completely oblivious, like someone with severe autism, or she could never have managed to start relatively unproblematically at a new school without the other children being warned that she has a problem.’
There have been marked changes in Sara’s relationship with Gemma. ‘The whole LB experience has noticeably improved the way she relates to me as well as others, to such an extent that I have strongly recommended it to parents with all manner of problems. I think she has finally got the idea that, beneath it all, we love her, and that makes her more grounded. When it goes pear-shaped, she gets it back quicker, and it’s not the end of the world, she is not nearly so lost. I notice that aspect becomes more consolidated after every time we go away for a full Special Time Away weekend. When these foundations start to tremble, that’s an indication we need to go away again.’
The LB programme has also required Gemma to behave differently. ‘I know I have to control my tendency to try and cope with the situation by analysing it. I am better as the result of the LB at just showing my emotion to her, being natural. I find she baffles me, and it’s easier to deal with her as an “interesting anomaly”, remove myself from the situation. I am better at being able to enjoy her, which is not easy. I do struggle to enjoy her, LB forces me to try. I have found it personally very beneficial, and it enables both of us to get closer to the other. I think it’s a great way of relating to your child: we use it with her sister, who has a very good relationship with my husband now. I would like Sara to do a weekend with him.’
Gemma suffers from epileptic fits, and her health is fragile. At its simplest, Sara witnessed her mother experience epileptic fits many times when she was a baby and toddler, a frightening trauma, and she will also have been neglected during those times.
There is good reason to suppose that Sara’s problems originated very early in her life, starting from before her birth. Gemma was extremely nauseous almost from the beginning of the pregnancy, right through to the end. This meant she was very stressed, making it likely that she had high levels of cortisol, which will have passed to Sara as a foetus, affecting the sort of baby she was after birth.
She had not been with her partner for long before Sara was conceived by accident. They had recently begun cohabiting in a new city and were not expecting to have children before they got married. Gemma recalls that ‘I was scared out of my brain, it all happened very fast. I started fitting during a visit to the hospital when they were doing a scan of the baby. Sara was born by emergency caesarean after I had come round from a fit, and she was in her Daddy’s arms 20 minutes later. I was out of it, on Diazepam [a tranquillizer], put in a side room rather than the maternity ward.’ Unfortunately, this proved to be a disastrous beginning. ‘They forgot to give me a bell, and I spent the first night with Sara in the cot beside me, unable to reach her, with no pain relief. When the cleaner came in, she asked why I hadn’t washed, and I said, “Would you mind passing me my baby because I haven’t seen her?” When a nurse finally came in, I asked for some advice on feeding and she just walked out, saying, “I don’t know why you can’t feed your own baby.” It was not the greatest of starts.’
It took some time before the breast milk came, so Sara was bottle-fed by a variety of people. Gemma finally breastfed for four months. She was on antidepressants and anti-epileptic drugs for all of this time, which may have affected Sara. Back home, Sara slept in a crib next to the bed and was a terrible sleeper (possibly because of being born with high cortisol levels). Recalls Gemma, ‘We tried all that controlled crying rubbish, which didn’t work. I was given four copies of Gina Ford, but eventually threw them away. I was persuaded to wean her at age 5 months, before she was ready, she screamed the house down when given yoghurt. It was worst in the early evening. The Infacol [treatment for colic] had to be forced down her throat.’
During Sara’s early years, Gemma had severe epileptic seizures and would have to be hospitalized for two-week stretches. This happened about every three months. On many occasions Sara witnessed these, and, as already noted, this was almost certainly a very considerable trauma for her, as well as resulting in her feeling emotionally deprived and insecure. The trauma could have led to her becoming dissociated – a remote, removed state of mind that can seem very similar to Asperger’s – or, indeed, a proportion of what is called Asperger’s may really be a form of disorder caused by trauma.
Gemma brought considerable adversities from her own past life to motherhood. She had been a very premature baby. As a teenager, there was self-harming and suicide attempts. She was taking antidepressants from age 21 and believes she had suffered depression from well before then. Her life had lurched from emotional trauma to trauma, her parents having split up when she was 11. She believes that ‘My parents went wrong from when my sister was born, when I was 3. When my Dad left, I remember aged 11 thinking, “I don’t get on with either of these people, but I have got to make it work with my Mum.” I didn’t hate them, but we were not close. Having been unable to cope with me as a baby, my Mum worked incredibly hard to build up a strong tie with me, probably too strong – she was relying on me too much. I was the oldest. I was very controlled by her. I still find it difficult to say that: if she realized I thought it, she would be very upset.’
Gemma has to fight not to be like her mother. ‘She was a strong personality, we were a bunch of Amazonian women. As a result, I think I try too hard to control – several people have told me that. So when Sara came along, it was a nightmare to have a baby I could not control, I am a perfectionist. Even so, although I was expecting having a baby to be horrific, it was lovely in the early years. I enjoy it far less now because everything is such an enormous battle.’ This may be because she has found it hard to let Sara be a separate person as she developed.
Just as Gemma had a deprived, lonely early infancy, Sara must have had periods when her mother was too depressed or ill to tune in to her. Toddlers and small children need responsive carers who can also respect their emerging independence. Just as Gemma’s mother could not tolerate her emerging separateness when she became a toddler, so it may have been with Sara. The most likely explanation for Sara’s tendency to regress to the toddler stage is that she is trying to re-experience that period but, this time, be allowed to make the developmental shifts that she missed out on first time because Gemma was too controlling (and perhaps also because of the trauma of witnessing the epileptic fits). The LB seems to have allowed some of this to have happened. That she is nearly cured of the incontinence is one sign: being allowed to regress to a toddler and to feel safe, in control and loved may explain why she very rarely wets herself now. Perhaps she no longer needs to use this as a way of feeling in control.
It is possible that Sara’s symptoms of Asperger’s are a manifestation of the unease she feels in the company of others, arising from massive irrational fears she has about them. Her toddler tendency also makes it hard for her to tolerate the delay in gratification that normal exchanges with others require. The idea that she has a genetically based, and therefore unchangeable, lack of a capacity to identify with the feelings of others is probably not helpful, as well as being either totally or largely incorrect. Nor is it likely that she is incapable of being mindful of the thoughts of others. The occasion on which she intuited that her mother was thinking she needed to visit the toilet seems to disprove this, emphatically. Much more probable is that she is so swamped by her own emotions and fears that for much of the time she is simply unaware of what others are thinking or feeling. When soothed by love and being ceded control during the LB, she becomes markedly more able to empathize with her mother.
However, none of this is to deny that Sara is different from other children and that being given a label could be helpful. Sara’s paediatrician has just provided a formal diagnosis of Asperger’s syndrome. Gemma has pursued this relentlessly, not because she believes the ‘unchangeable genetic destiny’ narrative by which the doctors explain it to her, but because it will have the consequence that future schools will take the problem more seriously and, above all, that Sara will get all sorts of extra resources devoted to her. If her classmates have the label explained to them, they are more likely to cut her some slack.
Nonetheless, without this label, she has made one good friend at her new school, albeit a bit of an oddball. When things go wrong between them, Sara struggles to understand. Gemma says that ‘Usually it’s something unbelievably obvious, and yet Sara has no idea why that would have been distressing. It’s at times like that I think there is something very peculiar about her mind, something missing. Yet at times she can read me. It’s confusing. It does feel like there are gaps; sometimes we bridge them, at others it doesn’t seem solid. She can have intuition, but the massive anxiety shuts it down.’
Gemma gave an illustration of the anxiety. ‘She was doing a maths practice paper for an exam. She is good at maths but was tired. She looked at the first question and went white as a sheet, then puce, a rapid shift that happens often in her [interestingly, these are signs of extreme activity in the anxiety system of the brain, triggered by cortisol]. She burst into tears, in a total panic – “I can’t do it, I’m rubbish at maths” – faced with calculations that she can actually easily do. She is incredibly averse to any feeling of challenge, new tastes, anything marginally risky, any emotional discomfort. She closes herself down and becomes blind to her surroundings out of anxiety.’
It seems highly likely that Sara’s lack of awareness of others is a product of the care she received in her early life and is only one of a raft of problems that resulted from it. Numerous studies suggest that such care produces lasting effects on the brain. By contrast, the evidence that differences in genes are responsible for this suggests they account for only 5–10% of the problem, at most.
Gemma’s unique use of the LB method is a landmark in its development. Through repeated weekends and extending the Top-Ups, she seems to be gradually reducing all of Sara’s symptoms, very likely altering her brain in the process. If the programme is sustained for several more years, it is possible that she will wholly cure her daughter and bring her into the normal range of behaviour of other children. If so, she will have invented a new way of helping some children who have symptoms of Asperger’s syndrome.
Other LB stories that relate to this chapter:
♥ Two nights away: Stories 1, 2, 6, 17 and 18
♥ One night away: Stories 3, 5, 7, 8 and 20
♥ Awaydays: Stories 4, 9 and 19
♥ At home: Stories 10, 12, 13, 14, 15 and 16
♥ Spending little or no money: Stories 8, 9, 10, 12, 13, 14, 15 and 16
♥ Children who were born preterm: Story 9
♥ Children aged 7–9: Stories 6, 7, 8, 12, 13, 14 and 20
♥ Single parent: Stories 1, 8, 10 and 19