Please also note: although the prices shown here are in UK £, most books are available internationally. If you’d like any further information on any of the books in the leaflet, simply click on the title you’re interested in and it will take you straight to the book information page.

If you’d like to download and print a copy of the leaflet, simply click here.

Life Story Work with Children Who are Fostered or Adopted

A Day in the Life…

Katie: 8.30 Arrive at work and try to catch up with emails. Reply to a birth mother who has reluctantly agreed to meet to support me with information gathering for her son’s life story. Need to book a room for a couple of hours, anticipating that she will need to express her feelings about the legal proceedings and the role of Social Care in her family life before I will be able to explore more positive stories about the child and their family life. Mindful of what a big decision it has been for her to meet with me, but also a little apprehensive about how I’ll manage strong feelings in the room.

Katie: 10.00 Session with an eight year old looked after boy and his foster carer. We are three sessions into a therapeutic life story intervention. I decide to assess the child’s emotional literacy. He is a big football fan – plays and has a season ticket to watch his local team – so I use footballing magazines to encourage him to create some Mood Boards. Together the three of us trawl through the magazines looking for images of footballers that express a range of basic human emotions – happiness, sadness, anger. I encourage the child to identify the feelings and he uses me and his carer as able assistants to cut the images out ready to stick onto his boards. I am surprised by how well he manages with this task. He is not a very articulate child and it would be easy to assume because of his history that he would struggle to identify non verbal communications, including recognising facial expressions in others. We create boards that will be a great tool later in the sessions when it will be important to support him to express feelings about events he has experienced in his birth family. This is also a good opportunity to get to know more about what is important to him in the here and now. The foster carer is invaluable here in reinforcing his strengths and sharing successes he has experienced in placement. I come out of the session feeling energised and privileged to have been able to share and celebrate his achievements.

Lesley: 11.30 Life story clinic appointment. This is a chance for social workers to discuss a piece of life story work they are doing with a young person, whether it’s for a baby about to be adopted or with an 18 year old who has spent his whole childhood in care.

The social worker comes in full of enthusiasm and questions, which is always a good start. She’s working with a 14 year old boy who has had many short term placements and a very muddled up idea of why he came into care at the age of four. He desperately wants to know more. We start by trying to unpick the tasks in this piece of work; thinking about the whole thing can be rather daunting, especially when it’s only one of so many other jobs of the social worker. We think about where the information for the story can come from and who should be approached. I encourage the social worker to look not only at the official Social Care story to be found in the files but to find out who else knew this boy and what alternative stories could they tell? Family members, nursery and school staff, previous foster carers may all help to bring this boy’s story to life for him. Funny stories; moving stories; things we will never find in the files-and so important.

Then we move on to the time spent with the child and what to actually ‘do’. I want the social worker to consider activities to help the child to feel safe so that he is supported to both tell and hear his story. We plan some activities in the ‘here and now’ such as likes/dislikes, what this boy is good at, what his safe place would be like. We move on to thinking about giving the child a space to reflect on his own memories of his past. This is so important in order to know where to take the work and to assess how able the child is to access his thoughts and feelings about what happened to him. I suggest the activity of sculpting to help the boy express his views on past and current relationships. Having a bag of objects for him to use as symbols of the people who are or have been important in his life creates a 3D genogram which can tell us a lot about how he views his world.

I think this is enough for now and the social worker goes away hopefully feeling more confident and armed with some practical ideas. I felt the session went well but I always wonder whether I touched on all the points I needed to or gave too much information and overwhelmed the social worker. It always feels good to be able to share my experience and knowledge with new workers and one of the advantages of the clinic is that she can always come back as the work progresses.   

Katie: 1.00 Meeting with the Steering Group looking at how IT services can support Leeds social workers in the life story process. A new IT service has been commissioned and we are looking at what system requirements we can request that will provide some structure around the process. I am keen to emphasise the need to avoid a manualised approach that ignores the importance of the relationship between the child and worker/carer in the life story process and to highlight the need to personalise the life story for every child. That said, I’m relieved that some thought is being given at a senior level to how as a local authority we can ensure that all looked after children have timely access to high quality life story work – both in terms of process and end product. This new system will save a lot of time for workers by locating all information relevant to life story work including photographs and video as well as text together.

Katie & Lesley: 3.00  Meeting to discuss the training to be delivered in the summer to social workers and social work assistants who are engaging children and young people in life story work. We review the evaluations from the last training to look at areas where we can improve on the material we deliver. A priority for social workers is accessing support in sharing difficult information with children and we think about how we might create a resource that will provide some guidance and structure around common concerns such as domestic abuse, drug and alcohol misuse and parental mental health issues. As always it is important to stress that any information sharing needs to take into account the child’s chronological age, cognitive and emotional abilities and developmental stage.

We both feel very passionately about training delivery and really enjoy engaging with social workers around a subject we feel should have a much higher profile for all looked after children.

At the end of the day we reflect together on our growing understanding of the relevance of life story work in supporting children’s recovery from experiences of trauma and abuse. We are realising that we are increasingly using a therapeutic life story approach as the first intervention before considering our more traditional therapeutic training as art and play therapists.

 You can find out more about Katie and Lesley’s book and order your copy here.

Activities for Older People in Care Homes

Here you can get a sneak preview of the book by clicking the link below to download some free activity ideas, which can easily be adapted to suit individual or group purposes, and can also be adjusted to suit differing levels of movement and interaction.

Sarah Crockett – An Activities Handbook – Extract

Visit our website to get additional information or to order your copy of Activities for Older People in Care Homes.

‘Positively Parkinson’s’ by Ann Andrews

This extract looks at coming to terms with a diagnosis of Parkinson’s, including examples of how the author Ann Andrews, as well as others, managed to accept their diagnosis, and what helped them to do so. Click on the link below to read the full extract.

Ann Andrews – Positively Parkinson’s – extract

Visit our website to get additional information or to order your copy of Positively Parkinson’s.

The Essential Guide to Life After Bereavement.

Everyone it seems is afraid of saying the wrong thing, and the more tragic the loss the greater our fear. So why is it so hard for us to know what to say when someone has been bereaved? Is it possible to say the wrong thing?  Does it matter what we say, as long as we convey by our tone of voice and facial expression the fact that we care?

In both my personal and profession experience there are certain phrases and actions that are more helpful than others, but without any shadow of doubt the worst action of all is no action at all.

Because we don’t know what to say, we may go out of our way to avoid the person who has been bereaved by literally or figuratively crossing the road to avoid them. Thus we are in a sense punishing them for something that was out of their control. We are isolating them at a time when they most need support. Sometimes all that sustains the person going through a crisis is the knowledge that other people care. They need to be wrapped in a symbolic blanket of love and support. So, how can we best comfort those in emotional pain?

‘I don’t know what to say’ and ‘I’m so sorry to hear’ are quite helpful expressions and cover most eventualities; ‘I wish I knew what to say’ is another variation on the theme.

‘Is there is anything I can do?’ needs to be backed up with something concrete. For example ‘if there is anything I can do this is my e-mail’ (for a work environment) on a personal level you could say ‘I am not working on Monday, would you like to meet for coffee?’  Alternatively ‘I’m going to the supermarket can I do any shopping for you?’ or ‘would you like me to pick up your kids from school?’ if appropriate.

Practical offers of help are often welcome and much more helpful than an empty ‘if you need anything don’t hesitate to call me’ which often makes the speaker feel virtuous,  but leaves the recipient unfulfilled and unlikely to take up your offer believing, possibly correctly, that it is not meant.

If the bereaved person says ‘I miss him/her so much’ a reasonable response could be ‘what do you miss most about him/her?’ allowing the person the opportunity to talk about their loss rather than trying to change the subject.

Trying to jolly them along with comments such as ‘but you have two lovely children/grandchildren to take your mind off him/her’ is not helpful.  It may make you feel better because you have said something to ‘cheer them up’ but you will not be helping them at all.

The ‘why did this happen to me?’ type of unanswerable questions that  many professional and non professional carers fear,  can be answered with ‘I wish I knew the answer’ or ‘I wish I knew what to say that would help’

The point is that is not essential to have an endless supply of wise words. The person you are with needs to know that you care and that you want to be supportive. It is not necessary to have a brilliant philosophical response.

The importance lies in being there and being able and willing to really listen, giving that person your whole attention.

To truly give someone your full attention without interrupting them is a gift, and if you can listen without giving them your unsolicited advice, your experiences, or what your neighbour did in similar circumstances, it is a rare gift indeed. 

Judy Carole Kauffmann is the co-author of The Essential Guide to Life after Bereavement – Beyond Tomorrow  (Jessica Kingsley July 2013) and End of Life the Essential Guide to Caring (Hammersmith Press 2010). She facilitates workshops on Bereavement and Loss and can be contacted on 07919 072111. I f you’d like to find out more about her work, visit End-of-Life Management.

In our book on healing eating disorders we emphasize the benefits of a holistic approach to the treatment of issues such as disordered eating, body dissatisfaction, related mood disorders and more.  Action methods which involve the body as well as the mind, heart, and spirit are particularly effective and lend themselves to collaboration with several other modalities which we explore in our book:  art, music, mindfulness, Reiki and other energy work, acupuncture, yoga, and more.  Case studies and a variety of examples illustrate a number of creative options.

In a recent 90 minute workshop given at a yoga studio, I combined action methods, education, mindfulness, poetry, art and yoga so participants could experience the power of integrating these modalities.

Following introductions and group guidelines (confidentiality, self-care, freedom to choose one’s level of participation and an overview of class, and so on), I introduced the class to the concept of “the Witness Role”—the part of the self that can step back and observe thoughts, feelings, and behaviors without judgment and with compassion.

Prior to class, I had blessed the room with Reiki and placed a selection of artistic photograph cards (spring landscapes*) along the window sills.  Group members were invited to select a card that could “ . . . hold the Role of the Witness for you throughout today’s workshop.  Share the card and reasons for choosing the card with one other person in the room whom you do not know.”  Then, cards were placed somewhere in the room where each card could “hold the role of the Inner Witness” for the time of the workshop.

Then, returning to our circular seating arrangement, class members were instructed to look in their folder for a copy of a poem which I selected related to the theme.  After reading, members shared verbally which lines of the poem resonated with them.

Following this, was the teaching of basic yoga principles specifically as they apply to issues around making peace with food and the body and developing “the Self-Care Role”.  Topics included “Yamas” of non-harm to self and others; truthfulness to self and others; being authentic; discerning the difference between needs and wants; moderation; and releasing attachments to outcomes.  Next, the “Niyamas” for cultivating a healthy inner life:  external and internal purity; “the body is a temple of the spirit”; practice of contentment and maintaining equanimity—responding to life with love and faith, not from fear; cultivating passion for health rather than obsession with weight or appearance; practice of self-observation (i.e. Inner Witness Role) by taking time to pause and breathe to understand one’s reactions and triggers; and the practice of surrender.

Next, ways of incorporating these into life were explored, beginning with the breath and the experience of noticing one’s breath mindfully followed by yoga breathing.  Following this was meditation on and off the mat, both with movement and in stillness.  And following was brief teaching about the power of positive affirmations; journaling; the necessity of movement balanced with stillness; getting support and practicing gratitude.

All teaching points were covered in handouts including the research supported benefits of Hatha Yoga such as the elevation of serotonin, helping alleviate depression, ADHD, anxiety and yoga’s multiple physiological benefits.

The class drew to a close with members each returning to the space where “the witness card” had been placed.  “Take the role of your witness and look at ‘yourself’ (envisioned on the mat or bolster where they had been seated) and in a few sentences from the Witness Role, tell yourself what you observed and the ‘take home’ message from the workshop.”  After each participant did this, the circle re-formed and each person stated his/her name with a hand on heart re-affirming the pledge of confidentiality and self-care.  For closing, the word and gesture, “NAMASTE” which is a slight bow, hands held in “prayer pose” by the heart, meaning “The Light in me honors the Light in you.”

The workshop feedback forms showed a consensus of the group members’ experiences as:

“ . . . inclusive, thoughtful, gentle, non-judgmental . . . loved the learning and the helpful reminder of how to incorporate yoga into my recovery . . .”

*Thanks to Landscape photographer and poet Alma Nugent for providing these.

For more information or to buy Healing Eating Disorders with Psychodrama and Other Action Methods, please visit our website.

‘Remembering Yesterday, Caring Today.’

This week is Dementia Awareness Week in the UK, so we thought it would be the perfect time to share an extract from one of our classic books on using reminiscence to improve the quality of life for people with dementia.

This excerpt has been taken from the book Remembering Yesterday, Caring Today  by Pam Schweitzer and Errollyn Bruce, published by Jessica Kingsley Publishers.

Schweitzer and Bruce – ‘Remembering Yesterday, Caring Today’ - extract

Visit our website to get additional information or to order a copy of Remebering Yesterday, Caring Today by Pam Schweitzer and Errollyn Bruce.

Egg donation—how did it all begin? There are published records from as early as the late 1800s of experiments conducted on women who lost their ovaries at young ages. However, it was not until the arrival of in vitro fertilization in 1978 that physicians had a means for enabling a woman to become pregnant with another woman’s eggs. The first child born through egg donation was born in Australia in 1983.

In its early years, egg donation, though possible, was not readily available. The first donors were either sisters or cousins (of their recipients) or they were infertile women who were undergoing IVF. Since cryopreservation of embryos was not available to all, some of these women had “extra eggs” for which they had only two options: discard or donate to other infertile women. Another group of early egg donors were women seeking tubal ligation who were invited to donate their eggs in exchange for the cost of their procedure. Either way, donated eggs were relatively few and far between and for the most part, came from women whose donation was based more on practicality or expediency than on an affirmative decision to help an infertile couple. The scarcity of eggs made the experience challenging for would be recipients who had little way of knowing if and when donated eggs would become available to them. One mother of a now 23-year-old through egg donation recalls taking medications over an extended period of time to ensure her uterus was ready for implantation should a donated egg come along. She was literally “on call” for news that an egg was available. When the call came, there was no asking about who the donor was or what her genetic history revealed. The recipient was instructed to go immediately to the fertility clinic, where she underwent a full laparatomy (a surgical incision in the abdominal area) and a gamete intrafallopian transfer (GIFT procedure). The donor’s eggs were mixed with the recipient’s husband’s sperm and placed in her tubes.

Much has changed. Not only has IVF fully replaced GIFT as a vehicle for egg donation, but beginning in the late 1980s, women were actively recruited for voluntary egg donation. This began in medical clinics, some of whom continue to recruit donors. However, in the United States, independent “Egg Donor Agencies” rapidly replaced medical programs as the main source of donated eggs. By the late 1990’s it was common to see adds like the following in college newspapers:

“Make a dream come true. Help a childless couple become parents. If you are under 34, healthy, a non-smoker, please consider donating some of your eggs. You will be compensated for your time and effort.”

The arrival of these programs transformed egg donation from something extremely difficult to arrange to something that, with financial/health insurance resources and access to medical treatment, can be launched with a few visits to internet web sites. One need simply type in “Egg donation” to be connected to agencies with names ranging from “Precious Wonders” to “Tiny Treasures” to “An Angel’s Gift” to “Peas in a Pod” and “Our Fairy Godmother.” As of this writing, there are 94 Egg Donor Agencies listed on the website of the American Society for Reproductive Medicine. Most have tantalizing websites that offer hope to infertile couples many of whose journey to parenthood as so far been filled with only disappointment and loss. They also offer the promise of financial and emotional reward to young women who are invited to undergo ovarian hyperstimulation and egg retrieval.

Just as there have been changes in the availability and accessibility of donors, so also have there been shifts in the way people think about egg donation. In the early years there was a real sense that the science was advancing far more rapidly than our understanding of what it means for a person to be physically born to three people. Instead of taking note of what a seismic shift this marked in human reproduction, physicians presented egg donation as a treatment for female infertility. In so doing, they missed the opportunity to examine, make sense of and ul†imately celebrate what egg donation means for identity formation and our understanding of kinship. Sadly, egg donation was pushed into the shadows, spoken of in hushed tones and burdened by secrecy.

The experiences of parents through egg donation, their children and their donors changed significantly with the arrival of the Donor Sibling Registry in 2000. This US based worldwide registry was founded in 2000 by Wendy Kramer and her son, Ryan, who was conceived via sperm donation. The registry helps people connect with donor relations.  In the 12 years since its founding, the DSR has helped connect over 9200 individuals with their donor relations. Wendy Kramer reports there are on average two new matches every day. For egg donation families, this has meant that parents have connected with donors, donors with offspring and as the name of the DSR suggests, offspring with other offspring.  As word of the DSR has grown and with it, people’s appreciation of the significance of genetic connections, families have been turning to the DSR in new ways. As of this writing, there are several egg donor agencies in the US that include the DSR in their donor-recipient contracts, making it possible for people who want anonymity (or at least to start out with no identifying information) to remain in touch and share photos and updated medical and social information.

Where Are We Today?

Looking at egg donation today we see a very different picture from what we saw even as recently when we prepared our 2005 edition of Having Your Baby Through Egg Donation.  In addition to the changes noted above, we see changes in the way ED parents feel about their path to parenthood. The secrecy that prevailed in the past has lifted and been replaced with honesty and privacy. True, there are some ED parents who still feel they have something to be secretive about, but increasing numbers are treating their child’s story as an open but private matter. They don’t go around saying “my egg donor baby” etc, but acknowledge donor conception when there is a reason to do so. In talking about it in a natural and appropriate way, most find that others are fully accepting of and comfortable with egg donation. Accompanying this more open approach to egg donation in general has been increased comfort with the donors.  As one mother through egg donation put it,

“When I first heard about egg donation, I did not want to meet my donor because I thought that I would see her face in my child and it would upset me. Now I feel the opposite. I have twins and one looks just like the donor. I love it because it is a constant reminder of the remarkable woman who helped make us a family.”

With increased comfort and familiarity with egg donation has come increase use of this option. Or perhaps it is the reverse—as more people have become parents through egg donation, more of them have become comfortable speaking openly about it. Either way, the use of egg donation is on the rise. In 2010, the most recent year for which the SART (Society for Assisted Reproductive Technology) statistics are available, there were 9, 321 transfers using donated eggs. Over 55% of these result in live births. This is the official SART number. Wendy Kramer of the DSR found, in surveying parents through egg donaton, that 42% were never asked to inform their clinic whether they had a live birth. Some did so voluntarily and others did not. If we add in the pregnancies that resulted from frozen embryo transfers, there were over 8,000 births in the US alone (in 2010) from donated eggs.

So egg donation in the US is accepted. It is also common. And it is available. All that said, it can still feel overwhelming to embark on a path to egg donation. Recipients must identify a medical program that they have confidence in, figure out how they will afford the medical treatment and often, donor and other fees and they must find and secure a donor.  All of this is do-able but it takes time, wherewithal, money, stamina and information.

Although egg donation has enjoyed widespread acceptance and relatively little scrutiny in the United States, this is not the case throughout the world. In Italy, for instance, a law was passed in 2004 completely banning oocyte donation, banning as well use of donor sperm and helping women past childbearing age becoming pregnant via ARTs. The road to this law started in 1994 when Italy made headlines when Dr. Severino Antinori used donor eggs to get 63 year old Rosana Della Cortes pregnant. Robin Marantz Henig’s New York Times article (2004) states,

“We are learning the wrong lessons from our earlier misadventures. Things got a little out of hand, yes, but that is because governments around the world adopted a hands-off policy towards the whole affair. It was too complicated to reach consensus about what steps were too intrusive, about when human life begins, about what risks were worth taking for the sake of having one’s own biological child. So governments turned their backs on reproductive technology and allowed the field to be taken over by cowboys.”

Still, unable to come to a consensus about exactly what should be accepted and what should not as far as egg donation, countries like Italy, Austria, Norway, Sweden and Switzerland have also nearly eliminated ovum donation. While such strict laws serve to call everyone’s attention to the potential for ethical abuses in egg donation, they also create new social problems. There now exists what has been termed “fertility tourism”—people living in countries that ban oocyte donation are traveling to other countries to obtain eggs.

Visit our website to get additional information or to order a copy of Having Your Baby Through Egg Donation 2nd edition by Ellen Sarasohn Glazer and Evelina Weidman Sterling.

Chris Mitchell author of Asperger’s Syndrome and Mindfulness considers how mindful thinking can reduce recurring episodes of depression and feelings of low self esteem.

Many adults with Asperger’s Syndrome, including myself, have obtained their diagnosis following a period of depression. An Asperger’s Syndrome diagnosis is a starting point in gaining a stronger understanding of who you are. It may take a little more time and patience though at the point of diagnosis to accept who you are as you are, as well as for those around you, especially your family. Initial relief and acceptance of the diagnosis though can then become clouded by anxiety of how the condition may affect one in their future, including in situations which they may be yet to experience. This is where adults with Asperger’s Syndrome may be liable to relapse into depression.

In this sense, depression is effectively present in a continual now within many people with Asperger’s Syndrome in that one can relapse into it at any point throughout their life. As those who have experienced depression will be familiar, some of its effects may also include high-level stress and anxiety. Often treated with anti-depressants, these are only effective if one keeps taking them. While it is not possible to cure or eliminate the possibility of relapsing into depression, including through medication, one can change their relationship with it so that one doesn’t become trapped by depression.

Simply noticing when you are relapsing into depression, as well as noticing its effects, is a good starting point in coping with it. Obsessive compulsive tendencies characteristic with Asperger’s Syndrome though may make it difficult to let go of feelings and thought patterns that arise during depression. Feelings that the mind may find itself lost in when depression recurs can include the mind forming comparisons of where we would like to be or how we would like it to be.

A person with Asperger’s Syndrome in adolescence or in adulthood may experience low self-esteem feeling that they have missed on things in life that appears to be the norm for their contemporaries, with the mind painting a picture that they are ‘inferior’ to others around them.  One’s natural tendency to cope with such feelings may be either to allow them to take hold to the extent where one’s actions and behaviour is controlled by them, which can potentially result in dangerous habits such as self-harm. Alternatively one may also try to cope by suppressing or banishing negative thoughts. This method though often only leads to higher levels of stress and anxiety when such thoughts keep coming back.

The next stage of coping effectively with depression, however, involves being able to notice that how you feel isn’t how it actually is, with our perception and reality being two different things as well as our thoughts and assumptions as to how things around us appear not necessarily being facts. When one is able to notice this, it enables one to work with depression rather than finding themselves trapped in it. Increasingly being recognised as a tool to help cope with anxiety and depression, including by the UK’s National Health Service (NHS), mindfulness practice, including meditation and related breathing exercises can give one control over depression through being able to acknowledge and accept negative thoughts and emotions, allowing them to arise and pass.

When hearing the term meditation, one may immediately think of sitting still in an uncomfortable cross-legged position, but the mindfulness practice offered by the NHS in a secular rather than spiritual context and delivered over an eight-week period is surprisingly flexible and much more accessible than one may perceive. What has been one of the most simple, accessible and effective practice for me to help cope work with negative thoughts and emotions has been the three minute-breathing space, which can be practiced at just about any time of day.

Over time, with a little patience and effort, mindfulness practice can enable people with Asperger’s Syndrome to reduce recurring depression and take more control over their lives, including being able to make the most of the strengths their condition may present.

 For more information about NHS Choices’ mindfulness programmes, see the following link http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mindfulness.aspx

Chris Mitchell is currently raising money for the Daisy Chain project in Stockton-On-Tees. Daisy Chain is a charitable foundation that provides support services to the autism community, including animal therapy and arts therapy projects. To find out more about Daisy Chain and Chris’s fundraising events visit. www.justgiving.com/Chris-MitchellGNR

Asperger’s Syndrome and Mindfulness, Taking Refuge in the Buddah (2008) by Chris Mitchell is published by Jessica Kingsley Publishers.

John Clements

John Clements is a clinical psychologist with over forty years’ experience. A specialist in the field of developmental disabilities, in this blog post John reflects on the changing landscape of autism provision throughout his career.

I began my career as a clinical psychologist in the UK over 40 years ago, in Cardiff’s Ely Hospital for the mentally handicapped. Ely was the first hospital in the UK to be the subject of a major inquiry into abusive care practices. I arrived in the aftermath of that scandal, part of the effort to bring things up to an acceptable standard.

The conditions that I encountered left upon me an indelible impression. There were about 150 children being cared for, many that I now know to have been autistic though few were diagnosed at the time. They lived in wards of about 20-25, sleeping in dormitories, with very limited access to education and the subject of a major new innovation – being given their own clothes as opposed to being clothed from a communal store. The conditions for most of the hundreds of adults there (again, many I would now know as autistic) were startlingly worse – many in wards of 50-70, maybe 2-3 staff on duty at any one time, sleeping in large dormitories, no personal clothing and few personal effects of any kind, no access to engaging activities other than being let out into the ‘airing court’. The sights and sounds of this mayhem, the names of so many of these people, were never to be forgotten.

So as we come to World Autism Awareness Month and World Autism Day there is much to celebrate in how things have moved on. The list is long and I will draw attention to only some of these improvements:

• A greater personal and public understanding of what we mean by ‘autism’ in all its many forms. This has been driven by academic research of outstanding quality, the increasing number of autobiographies by people so identified, the many accounts of family members of their journey with their son or daughter, brother or sister plus the smaller number of films and novels. This combined effort has meant not just an improvement at the more ‘cerebral’ level of what autism means but also the forging of a more empathic connection with those affected. This double advance has in turn meant an increasing emphasis on autism as a different way of being in the world rather than some kind of disorder or dysfunction.
• Improved access to diagnosis so that it is now far easier for families to find someone local to them who can diagnose competently. Diagnosis is a mixed blessing but is absolutely critical for parental support, organising early intervention and planning service support throughout the life span.
• A much wider range of services available that can provide competent support and a move to make services more personalised/ individualised.
• More recently a proper grasp that autism affects you throughout the life span and that we cannot just focus our efforts on children. We need to understand that adults have both enormous potential and a need for ongoing support if they are to find fulfilling and constructive lives.

I am sure there are many other ways in which things have moved forward. Things can always be better but it is also important to take time out to celebrate the achievements that have been made.

However not all is rosy in the garden. Of the many potential concerns I want to draw attention to what I will call ‘autism’s dirty little secret’, something that we struggle to acknowledge openly although everyone knows it to be the case. Along with the general territory that we call ‘autism’ comes a fragility or sensitivity that impacts the lives of many, some to a very serious degree. This is the vulnerability to sustained negative emotional experiences and to a lack of coping resources for life’s common difficulties. These difficulties often lead to the presentation of very difficult, sometimes dangerous behaviours. This may be part of a brief phase in life but often it is a much longer term issue. We have a lot of research which informs us about the nature of these difficulties and the supports that will move these situations on; but we fail extensively to act on this long standing evidence base, preferring instead to opt for denial (autism as ‘harmless eccentricity’ model) or for the deludedly comforting pathologisations of the ‘mental health’ industry. Thus parents are left struggling with hugely difficult behaviours, receiving little in the way of constructive and sustained support. Teachers and care stuff are left struggling likewise although they at least may get the ‘hail Mary’ intervention of increasing the number of staff to deal with a problem (without of course any necessary increase in the competence of that support). As situations go unresolved there remains the good old fashioned institutional option of moving the individual to some kind of (not so) special congregate service (‘challenging behaviour unit’) where they will languish, the evidence suggests, increasingly medicated, rarely in receipt of the supports that the evidence base indicates as effective and at risk of the very kind of abuses that I was introduced to 40 years ago. Read the Ely Report, read the inquiry into Winterbourne View, spot the difference and then tell me why we should listen to latest politician explain to me how we need to ‘learn the lessons’. There are no new lessons to be learned – we simply need to act on the lessons that were learned long ago.

So at this time of celebration I want to suggest

• We open up about the behavioural and emotional vulnerabilities that come with the autism territory
• We demand that the evidence base available is turned into services and working practices available to all those effected (both the individuals with autism, their families and others who live and work with them)
• We demand an entitlement to these services – that if we are going to identify people has having ‘challenging behaviour’ then that identification has to come with the entitlement to receiving the supports most likely to yield improvement

Can we do this? YES WE CAN

Will we do this?

John Clements is the author of ‘Letters to the Home Front, Positive Thoughts and Ideas for Parents Bringing Up Children with Developmental Disabilities, Particularly those with an Autism Spectrum Disorder’ published by Jessica Kingsley Publishers.

Part of our celebration of World Autism Awareness Month 2013- see more posts on Autism, Asperger’s Syndrome and related conditions.