Issue 09 Summer 2013 £3.99 / Free to members
autism matters
In this issue...
THROUGH MY EYES
SCOTT JAMES TALKS ABOUT MUSIC AND HIS CHARITY WORK
ASK ANNIE
OUR AGONY AUNT ANSWERS YOUR QUESTIONS
PERSONALISATION
INTRODUCTION TO SELF-DIRECTED SUPPORT, PERSONAL BUDGETS & DIRECT PAYMENTS
THE VISIBLE TEENAGER WITH THE INVISIBLE DISABILITY AARON YORKE WRITES ABOUT HIS, AND HIS SON’S EXPERIENCES GROWING UP
THE EXTREME MALE BRAIN GENDERED LANGUAGE AND ASPERGER SYNDROME
MAKING SPACE FOR FRIENDSHIP
TWO INDIVIDUALS TELL US HOW BEFRIENDING HAS CHANGED THEIR LIVES Autism West Midlands • Regent Court, George Road, Birmingham, B15 1NU Telephone: 0121 450 7582 • Email: hello@autismwestmidlands.org.uk
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Autism Alphabet book and workbook
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Message from the Chief Executive Knowledge about autism is increasing all the time. It’s now clear that there is a strong genetic link to autism. More accurately, there are numerous genetic links to autism, but the links are not straightforward, and there are probably environmental factors which combine with genetic factors to produce autism. Now that we can see the entire human genome, it’s far easier than in the past to identify genetic markers which link to certain conditions. A wide variety of markers have been associated with autism. In most cases multiple markers are needed to result in autism, with very few instances of autism which can be linked to a single marker. However, we can say with reasonable certainty that autism means that the brain develops in a different way.. Some of the differences can be positive; some can be negative, and some are just different. The brain differences mean that autism is lifelong. Better understanding – especially better
understanding of the person with autism as an individual – can produce enormously positive effects in life skills, social interaction, and wellbeing; but the autism remains.. As people with autism head into old age, it is not clear how autism will be affected by agerelated physical and mental change. The answer is likely to be different for different people. That is why it is so important to continue research into autism, and to continue the ceaseless search to improve autism practice. Best wishes, Jonathan
Contents Article:
Page number:
The visible teenager with the invisible disability
4
Through my eyes
6
The extreme male brain
8
My story
9
Personal budgets, direct payments and self-directed support
11
Woman. Wife. Mother. Entrepreneur. Autistic
14
Making space for friendship
16
Ask Annie
17
Journal Corner
19
Editor: Sarah Francis If you would like to contribute to Autism Matters, please email hello@autismwestmidlands.org.uk 3
THE VISIBLE TEENAGER WITH THE INVISIBLE DISABILITY By Aaron Yorke Aaron Yorke is a qualified Special Needs Teacher with a specialism in Asperger Syndrome (AS).He was diagnosed with AS as an adult and has a 13 year old son also diagnosed with the condition. At present Aaron works on a consultancy basis sharing experiences and knowledge within schools, youth clubs, community projects and parent groups. My son is 14 years old. He is loved. He is secure. He is generally happy. He is also a handful at times and can be very obsessive in nature. He prefers everything on his own terms and tends to get easily overwhelmed when placed in social situations. Cameron has Asperger Syndrome (AS) and is about to enter what I
believe to be the toughest years he will ever face in his life. I think another difficulty is the anxiety it brings me. Its like I am re-living my own teenage years through him. Seeing how he struggles and not having the answers to help him is both frustrating and very familiar. I was not diagnosed with AS until I was 30 years old. All I 4
remember was being a confused kid labelled naughty, own private universe. I only wish I had been shown that rebellious, selfish, and mad. Cameron knows he has it is ok to do this. My private universe was amazing! I a condition that makes him different. He knows he is just did not know I could access it anywhere else other different and he knows why. As a teenager I knew I was than in the safety of my bedroom. different but I did not know why. Education, education, education. Invisible struggles Another big problem area for teenagers with AS On the surface Cameron is happy, and seems is eduaction. Cameron is protected from education very social. However, spend a day with him and you as much as he can be, but it still negatively affects quickly see that he is different. He is him on a regular basis. I work closely “...I know that having easily distressed and will become with his school and do not accept bad a child with AS overwhelmed in a single moment. practice. Luckily his present school is a This is hard for people around us great place for him. Its just that there are means you never to understand. I always get the ‘he stop fighting for them. a few teachers who take him personally is just being a boy’ comment. The and think they know how to teach him. You never give up battle I have is that I know he is not on them. You always At parents evening I always hear the just a teenage boy. He is a teenage same resounding words: Cameron is have to be their voice boy with AS. This is very different and so capable of learning, he just needs to helping them to find unless you live with someone who make the decision to want to learn, if only their own. ” has AS you will never understand it. Cameron could change, If only Cameron My teenage years were one long would realize what he is capable of.. dark drawn out event I wish had never happened. Hold on a minute, is it not the role of the school I was not safe. I was not secure. I was labelled a and the teachers to inspire pupils to learn? To help delinquent and a rebel. I was confused, scared and them remove barriers to learning? To find ways how the alone. I took drugs and drank a lot of alcohol. I was a student can maximize his potential? In the UK we are secret anxiety coper. I did not know it at the time but such a long way from successfully educated young I drank and smoked drugs to calm my nerves. I had people with AS. It is so frustrating. panic attacks in the most strangest of places and had Acceptance of AS little social understanding of how to act in a group. I I am an adult with AS. I still struggle with anxiety had no guidance. I had to learn on my own. I did not and depression the same way I did as a teenager. I care about life or consequence. I did not understand guess in some ways its harder now. As a teenager I consequence, it was an alien concept to me. I was a always thought I would find a cure for me. I always sad, angry, confused teenage human being. I hated it. believed that one day I would be normal. Now I am I hated every moment. older and still the same I realise I have to accept that Being a teenager and fitting in the elephant in the room is not going anywhere. Cameron never goes out on his own. He basically Cameron knew early on he was different. He is ok wouldn’t cope. Socially the streets can be a dangerous with it. His struggles are more so with other people place. A place full off teenagers with social radars that not accepting him. This I try to tell him is a life long easily spot the ‘odd one out’. Cameron is lucky as he battle. He will always meet teachers who get him, and wont meet these people. I was not lucky. I met them, I teachers who do not. He will have friends who accept hung out with them day in and day out. I was expelled him and people who will not. This is life and this is not from school at 14. All I knew was to hang around the anything he can change. I always like to remember streets. I did have a few friends, but mostly people what Bernard Baruch said - “Those who mind don’t would laugh at me not with me. Cameron knows he matter, and those who matter don’t mind.”. is different because of AS, I did not know why I was The battle never ends different but I surely felt different. I know that having a child with AS means you never Some say its easy to be a teenager. All you have to stop fighting for them.You never give up on them. do is follow what everyone else is doing and do that. Wear the same clothes, hang out in the same places, listen to the same music, have the same friends. If you do all these things then you may just be ok. I always struggled to identify social norms and to accept others opinions. Luckily for Cameron he is protected by opinions and social norms. He is happy living in his
You always have to be their voice helping them to find their own. I am determined that Cameron wont have anything unnecessarily wrecked by his teenage experiences. For those life moments that do break, at least I will be here for him to help glue things back together. Oh how I only wish someone had been there with some glue for me. 5
THROUGH MY EYES By Scott James Scott was diagnosed with Asperger Syndrome at 13, and during a period of being bullied at school, he developed his love of music. He applied for the X Factor and at his audition announced he was there to raise awareness of autism. Scott reached the final 50 and became an inspiration to the autism community. He recorded Through My Eyes, which was released in 2011 to raise awareness and funds for autism. He now sings around the world to further the autism cause he is passionate about, and has raised thousands of pounds for charities. My name is Scott James and I was diagnosed with autism while I was at school. We realised that I was having some major difficulties and I was assessed for a lot of different things before being diagnosed with Asperger Syndrome when I was thirteen. I attended assessment appointments over a full year before being referred to another specialist who diagnosed me after several more weeks of appointments. I had trouble at school with socialising and joining
in with the other children. I was badly bullied and spent a lot of time alone. I grew very close to an elderly gentleman that my mum was taking care of. He fell ill and passed away and this prompted a depressive rage from me and I set fire to his armchair. This was the trigger for us to seek a diagnosis for me. I didn’t find my diagnosis particularly helpful at first because I felt like I was left to cope with it alone. It gave me a reason for my differences but I did not receive 6
the support I needed to make sense of that and to provides assistance and opportunities to people with move forward. I continued through life without answers learning difficulties and also runs an online radio and this caused a lot of trouble for me and the people station, LDOK. So, all-in-all, life’s pretty interesting right around me. This was incredibly frustrating and it is only now! Because of the work I do, I’m ‘out there’ a lot, during the past few years that I have finally been able which is helping me cope with my fears and social to understand and come to terms with what ‘autism’ insecurities. As a child I was severely bullied and it truly is. has left its mark, but I’m moving past that now and I am a huge geek and therefore have a great love focusing on my charity work. for video games. I’m also a big horror movie buff, which Despite the struggles, I have found myself in tends to alarm some people! I am also totally addicted this wonderful community of people. These people to rollercoasters. However, singing is my passion; it understand me and I love being able to help others. basically changes me from being a timid hermit to Social media is amazing - it’s allowed me to be in the life of the party. Of course, I do get a little stage touch with people all over the world and it’s also fright now and again but so does provided me with many amazing everyone else! I do like to write songs “...singing is my passion; opportunities. I am also lucky and music but, to be honest; I’m not it basically changes to have a circle of friends who very good at it…yet! Practice makes me from being a timid understand how I cope with certain perfect though, right? scenarios and can support me if I hermit to the life of the I appeared on the X Factor and feel insecure but I can certainly still party.” made it through to boot camp. The have my moments! X Factor was a really fun experience, In my eyes, ASD has pushed my but a terrifying one too. The sheer number of people focus onto something I truly enjoy doing. You see many that attended the auditions was frightening to me articles about those on the spectrum doing amazing and having to socialise was difficult, but luckily the things. We have seen a young boy with an ASD on the production team were very supportive and helped me cusp of winning a Nobel Prize, Temple Grandin and out whenever I needed it. I had a few problems close Daniel Tammet: there is a massive array of amazing to the end of my stay on the show, but overall it was people who have shown the world just how incredible great. people on the spectrum can be. I am proud to be I now do a lot of charity work for autism. I travel autistic. And I am proud to help represent a broad, all around the country (and sometimes abroad) amazing collection of people performing and raising funds for worthwhile autism I would say that the most important thing to do causes. I’m currently in the middle of recording upon receiving a diagnosis is reach out. There is a some brand new music, too. I was recently asked to whole world of people in the exact same boat out be the patron of a new organization called Autism there; those who can help you come to terms with Wishes, which raises funds for selected charities, raises your diagnosis, help you understand, and can help awareness and also grants ‘wishes’ to children on the support you. Don’t shy away; there are people and spectrum which is a huge honour! I’m looking forward organizations out there to help and the journey to getting stuck into that too. becomes a lot less daunting when you have people I’m also pushing an album, Spectrum, that raises around you that understand and can help you. funds for The Heroes Project, an organization that 7
THE EXTREME MALE BRAIN By G.L Wild When I was 11 years old my mother was told that I had Asperger’s Syndrome. Now, as then, I feel it is a constructed category created as a result of others’ inability to understand how I work or how to interact with me as much as out of any inability to understand and interact with them. It has always puzzled me why the blame for this two-way problem gets to be thrust at the feet of the minority, but as I have gotten older I’ve realised this isn’t the only context in which such constructions appear, and I have, like most readers here, resolved to address as many of them as possible wherever I find them. The oppressions facing individuals on the autistic spectrum intersect with the oppression of women in a number of ways: autistic communities are overwhelmingly male dominated due to the higher rate of diagnosis in men; medical research into the area has historically been focused on men to a greater extent than in other areas of psychiatry; higher
expectations imposed on women to be nurturing, socially pleasing, and sexually available can increase pressure even further on girls. What is less often critiqued in public discourse is the effect that gender constructions within psychiatry have in impeding the understanding of autism and feeding into populist stereotyping. In 1999, Professor Baron-Cohen published his famous paper “Is autism an extreme version of the ‘male brain’” in which he argues that ‘there seem to be different cognitive styles associated with being male or female’. He states that for the purposes of the article he “operationally defines the male brain type as an individual whose spatial skills are in advance of his or her social skills...regardless of biological and chromosomal sex”. In case your unscientific female brains can’t work it out, this means that your mother could have a male brain and your father a female one. Having defined skills known to be more prevalent 8
in autistic individuals as ‘male’, or at least those that fit processing; often the things which autistic people are with existing stereotypes about maleness, he then goes more likely to experience as disabling. on to argue that autism is an extreme version of this. Baron-Cohen argues that there is scientific value According to Baron-Cohen’s theory, because the in understanding the differences between the way male brain is more ‘mechanistic’ and ‘systemising’, in male and female brains work as a group and this is extreme cases this can lead to the lack of empathy not inherently wrong. While this is true, in pursuing his or ‘mind-blindness’ seen in autistic people. There are research in a way which defines brains as male or a number of problems with this. female by extrapolating from how “...People tend to Firstly, the whole idea of empathy is these groups behave on average, difficult. People tend to empathise empathise with people he creates a significant researcher with people who are similar to them who are similar to them bias in favour of looking at those - large numbers of individuals in aspects of autism which differ - large numbers of the autistic community have very individuals in the autistic between the sexes, despite those strong empathy with each other. It often not being the most important community have very is empathy between autistic people for autistic people themselves, and strong empathy with and neurotypicals (autistic-speak allows popular science to latch each other. ” for non-autistic people) that is on to his theories in order to make more difficult, and that’s a sword controversial headline-grabbing that cuts both ways. Not reading the same cues claims, which become watered down to very little in the same way is not the same thing as lacking of substance by the final paragraph. Overall, it is an feeling for fellow human beings, and this approach approach to science in which an academic white to autistic people has a tendency to demonise and man is willing to exploit the obvious damage he does other us. In ‘Zero degrees of empathy’ Baron-Cohen to women as a group in popular media in order to equates a hypothetical total lack of empathy with gain notoriety and funding for his own work. I would evil, suggesting if not stating that those of us who say that it seems he lacks empathy, but apparently I’m measure as less empathetic on traditional scales not qualified to tell. are less moral, and ignoring the role, of, say, having a strong and intellectually thought through moral code. G.L WIld writes for the F-Word, a blog featuring It also ignores or marginalises other crucial differences contemporary UK feminism. between autistic and neurotypical minds, such as differences in sensory processing, difference in our experience of time, in stress levels and in emotional
MY STORY By Janinne Wing My name is Janinne Wing and my son, Reuben, was diagnosed with Sensory Integrated Dysfunction with Autistic traits at 3 years old, with a later diagnosis of Hypersensitivity and Encopresis. I knew there was something wrong when Reuben was 2 weeks old and we set about getting him assessed. Since Reuben was born he has had so many different tests, including x-rays on his skull as a baby. We’ve seen a lot of speech and language specialists, occupational therapists and we have been under CAMHS since Reuben was 3 years old. In 2011 we had a new Doctor at CAMHS who was very understanding and listened to us about everything. She put us forward for a MDI test and an ADOS test in June/July
last year. After lots of discussions, we saw a senior Doctor for a second opinion on April the 13th 2013, and looking at all the evidence over the years, both doctors agreed my son is autistic. They also suggested Reuben’s older brother should have assessments, as I’ve had many problems with him too. We are in the process of this now. When Reuben was first diagnosed at 3 years old 9
with SID and Autistic traits, I was very sad. It hurt that he thing he talks about. He is studying music at college was different to others of his age. But I knew there had and is doing well since he left school. He passed all his to be a reason for his behaviour and lack of speech, GCSEs but had an horrific time throughout secondary so although I felt sad, I did my utmost to understand school. He barely attended school in year 10 so I took his condition. When I got the diagnosis of Autism last him out of school in Year 11 and taught him at home, month, I was just so relieved! It was only a few weeks which suited him much better. The school deemed before the diagnosis that I really had started to give him out of control and a naughty and aggressive up. I was beginning to think, I must be a really bad teenager, if he had been properly supported, he mum. The Doctor’s said ‘’ You’ve done a stupendous would have been an A* student. Unfortunately my job bringing your boys up, against all the odds’’, I was eldest son’s aggression issues were starting to affect overwhelmed. Reuben so he does not live with me now. He gets a It has been difficult for us at times because both lot of support now, though, and his weekly visits have boys have really issues with transitions and change. helped our relationship no end. Reuben’s passion This can be going on school trips or visits or anything and only subject of conversation is computer games. simple like brushing their teeth or moving from one I’m hoping now with this official diagnosis we can get room to another. Going out and about causes distress involved with other groups specific for children with for both boys, especially Reuben as he has sensitive an ASD, which I feel he will enjoy. Reuben tells me he hearing and he becomes very hyper. I dread if plans feels different to other children in his year at school, he get changed out of my really hates school, especially when control, again causes a lot of “... I wouldn’t ever want to it comes to breaktime or lunch, he anxiety. I’ve also learnt never change my two boys, they would prefer to stay indoors with the
to agree to do anything; it’s are both unique individuals teacher. We are working on getting always ‘’We’ll see’’, never say whom I adore. My oldest him a statement that will help with this. yes or no to something. The son sees the world different Reuben’s favourite time is to sit in his boys take everything literally fleece blanket on the computer, safe to me, which challenges my so I have to be so careful at home. way of thinking. Reuben is what I say and make sure I have learnt so much from beautiful and since he came they’ve understood what I’ve having children with autism spectrum said.They can be aggressive into our world, he has given disorders. In particular I have learned and this is a major problem me and taught me so much” to be patient and understand why my and they get stuck on one children are behaving in that way. I subject which can be very draining. Anxiety and wouldn’t ever want to change my two boys, they are worry is apparent in both my boys and my oldest son both unique individuals whom I adore. My oldest has for a while self medicated by using cannabis to son sees the world different to me, which challenges stop the feeling in his head. Both boys have suffered my way of thinking. Reuben is beautiful and since he with friendship problems. Neither has many friends came into our world, he has given me and taught and they find it hard to socialise. Both find it difficult me so much more than if I’d had a child without ASD. to understand personal space and how to read the Without Reuben being diagnosed we might not have reactions of others. recognized that there were very similar issues with Reuben has an audial processing problem too, so my oldest son too. Since the official diagnosis last he’ll say ‘’what’’ a lot and has to hear what you say month, it has given me a new lease of life. I don’t feel over and over again until he understands. This has got despondent anymore. I feel that I can now learn more less now he’s a bit older and his speech has got a lot and be there for both my boys to help them through better too. He has had a problem for a long time with the next stages of their lives. Encopresis, or soiling, and the hiding and moulding of The diagnosis has definitely been helpful as it it. This really does get to me. This also comes with other means that the school my son attends will now have stomach problems and constipation, in which Reuben to listen to us about Reuben’s needs. CAMHS have has been in and out of hospital for. Sleep has also already written to his school, telling them about his always been a problem and Reuben was able to go diagnosis and that they support his statement. The for days with no sleep. Fortunately in 2010 I was able to diagnosis has opened more doors to help my son. If get medication for this and Reuben and I had my first we could have had my other son properly assessed full nights sleep in 7 years. when he was younger, life at home and school could My oldest son’s obsession is music, which is the only have been very different. 10
For me this diagnosis was a blessing because it proved that I was right to be worried or a bad parent. The troubles we have had over the years are because of my children’s disabilities and not because I was doing something wrong. Finding out your child has an ASD may come as a shock, as it did for me when
Reuben was diagnosed. However, a diagnosis will only open doors to enable more help for your child. It is too late to help my oldest son through school now but it’s never too late and I believe all information is good to know and can only help with the future.
PERSONAL BUDGETS DIRECT PAYMENTS SELF-DIRECTED SUPPORT
AN INTRODUCTION By Julia Begley What are they? Self-directed support is a system of care that has been introduced by the government. It affects those people who are eligible for social care or support from their local authority. Under the new system, the local authority must give you the choice of what care and support you want to buy with this money. They also must give them the choice of who spends the money – for example this could be you, your carer or a family member. This is called a direct payment. You may also choose to have your personal budget managed by the Local Authority, instead of doing this for yourself. This means that you do not need to take personal responsibility for their budget and is especially useful in the event that the majority of the budget will go to a single service provider, such as a care home.
to have all council-funded service-users on Personal Budgets, preferably by Direct Payment, by April 2013. This target was not thought to include those claiming short-term support or those in residential care. The target for Personal Budgets for all, including these two groups of people, is provisionally marked for April 2015. Who are they for? Self-directed support and direct payments are available to those who have been assessed as requiring social services from local authorities. These may be: • Disabled people aged 16 and over with short or long term conditions, • Older people who require community services, • Parents of those in need of social services, • Carers of those assessed as requiring social services. The intention is that all council-funded service-users will be on the Personal Budgets scheme. However, the government’s preferred method of receipt would be via Direct Payment.
When do they start? This policy is already in place but is yet to be rolled out universally. The target set by the government was 11
a resource allocation system (RAS), has created a distraction from this challenge – and at great cost.” This is because surveys that exist purport to show that the system is working. However, the data may not be universally representative which could hide the fact that some people may be having their position worsened and their freedoms compromised. The surveys are most often based heavily on those that use Direct Payments. These have been around since the 1990s and tend to be taken up by those who have the support and capacity to make their choices independently of the state. However, most people do not fall into this group and, indeed, “most older and disabled people need to work with an infrastructure of advice, advocacy and administrative back-up to achieve the best approach to their support. The government must create the environment within which this can happen.” Personal Budgets and claims of their successes are taking away support for the system that would create such an environment. Furthermore, the
Why are they being introduced? Personal Budgets in general are being introduced to bring a greater sense of personalisation to care. They give greater autonomy and independence and allow you to allocate your budget in whatever unique ways are most appropriate for you and your quality of life. They are intended to replace the old centralised system that allowed for very little flexibility and differentiation between individuals. How will they work in practice? How can I get one? Your local authority can give you information on what and how much you are entitled to. You can then choose whether you would like your allowance paid directly to you to allocate and control yourself – Direct Payment – or if you would like the council to retain responsibility for the fund. An ‘Individual Service Fund’ is a fund that is managed by the council on your behalf. This is usually used to pay for residential care or some other expensive, long-term service. If you decide, instead, to take a Direct Payment, there are five steps to finding out about eligibility for direct payments and how much money a person is entitled to: 1. The local authority can provide information on what funding is available using a short questionnairebased self-assessment. This will then be used to calculate how much money could be available to you 2. You are required to create a support plan which will outline the support needed and a plan for how the money is likely to be spent 3. The council must assess and agree your plan 4. Once the payment is made, the money must be organised and a responsible party must be allocated 5. The money can then be spent on whatever is appropriate for you
idea that people can be told upfront what they will receive is flawed as there is no way of knowing what amount will be available in the council budget until after the care has been procured. Another expense is the extra staffing taken on by many councils, to manage the new system. However, there are others who suggest an entirely opposing view of the system. The same guardian article quoted above has the opinion of Julie Stansfield, of the charity ‘In Control’. She agrees that Direct Payments are significantly more successful than other forms of Personal Budgets and that the systems in place are all too frequently applied badly. However, she argues that it is the principle of choice and control that is important and that is encouraged by the idea of Personal Budgets, even though the delivery is not yet perfected. In Control’s publicity reports that, so far, Direct Payments are having a positive impact on serviceusers and their quality of life and choice. When all the necessary information is provided to service-users – amount of budget, potential options, and possible issues – the system appears to be successful. The charity published a report stating that, while Personal Budgets did appear to have had a positive impact on the quality of life of service-users, the choice and independence available to service-users was not as extensive as suggested by official estimates. The charity ruled some people out of their study as they did not believe them to be an accurate reflection of the ideals of Personal Budgets which they specify in 3 bullet points: • know how much money they can have for their
What concerns have been raised and how are these being addressed? The push to get service-users onto self-directed support has been criticised by the Association of Directors of Adult Social Services. They warn that it has artificially driven councils to move people on to council-managed personal budgets without providing them with choice and control. Peter Beresford, a Conservative MP, wrote for the guardian; “ the government’s strategy for delivering [personalisation/independence], by giving people a “personal budget” to “self-direct” their support through 12
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PERSONAL BUDGETS DIRECT PAYMENTS SELF-DIRECTED SUPPORT
support, whether they receive it as cash (a direct payment) or not. • can spend the money in ways and at times that make sense to them. • know what outcomes must be achieved with the money. Presumably the people outside of this group should be considered as a separate problem and the report published only deals with the issues faced by those who are receiving and using their Personal Budget as intended. The changes appear, though, to be having different effects on different groups. Figures for 2011-12 from the Health and Social Care Information suggest a different attitude towards the changes, between older and younger disabled adults; They showed that 85% of older personal budget users had an entirely council-managed budget, compared with 54% of younger disabled adults. This suggests that older people are reluctant to take full control of their care allowance. There are concerns that councils are concerned to retain control of these budgets and may be using bureaucracy to stall independent allocations. 82% of social care professionals said there was more bureaucracy to deal with since ‘personalisation’ and much of this comes from the need to have forms and applications signed off by council panels, rather than by social workers and social care professionals. Some councils also prevent budgets from being spent on certain things, which include holidays, computer equipment and exercise activities. This appears to constitute a very real lack of choice and independence for service-users.
WOMAN WIFE MOTHER ENTREPRENEUR AUTISTIC By Cynthia Kim Cynthia Kim blogs at www.musingsofanaspie.com, where she writes about her experiences as a woman, wife and mother who was diagnosed later in life with Asperger’s Syndrome. She was 42 when she discovered that she has Asperger’s Syndrome. She is married with one daughter and has just released an e-book about adult self-diagnosis and self-discovery called “I think I might be Autistic”. I’ve been autistic all my life, but I didn’t know it until someone to hand me the secret handbook that would recently. explain all those social nuances the adults around me I grew up in an era when my diagnosis--Asperger’s seemed to instinctively grasp. To my surprise, what I got Disorder--didn’t yet exist. Kids like me were labeled instead was an autism diagnosis. geeky, shy or gifted. Year after year I brought home It was shocking at first, to learn that I’d lived more report cards that said I didn’t work and play well with than forty years of my life not knowing something so others, didn’t participate in class. fundamental and important about myself. For the first Because I was quiet and generally did well in few months after learning about Asperger’s I spent a lot school, the adults in my life wrote off my difficulties to of time playing “what if?” extreme shyness and timidity. What if I’d been diagnosed earlier? “...Decades passed and I’d grow out of it eventually and What if I’d been given the type of there I was, still waiting all of my problems would be supports and accommodations that for someone to hand me solved. That explanation carried children with autism receive today? Of the secret handbook that course, it’s impossible to know how my me into adulthood, where in would explain all those the back of my mind I was life would have been different. social nuances the adults waiting to magically outgrow On the face of it, I’m a typical my social and communication around me seemed to suburban middle-aged woman. I’m difficulties. happily married, proud mom to a instinctively grasp.” No matter how hard I tried-terrific young woman and a successful and believe me I never stopped small business owner. Someone might trying--I found it impossible to master fundamental look at those outward signs of success and wonder “people skills” like making friends or mingling at parties. whether I’m really “that” autistic. Decades passed and there I was, still waiting for Spend a day or even a few hours with me, and 14
you’ll stop wondering. I have all of the tell-tale signs of Asperger’s: poor social skills, communication difficulties, sensory sensitivities, a deep love of routines, lots of subtle stims, the working memory of a goldfish . . . the list is long and varied. Growing up undiagnosed forced me to make a lot of adaptations instinctively: structuring my work life to capitalize on my strengths and support my needs, developing skills like pattern recognition and scripting to navigate social situations better, setting up a regular exercise regimen to balance my moods, finding a life partner who has always embraced my differences. I’ve learned how to work around, minimize and accommodate many of the traits that make life with autism challenging. The catch is, I’ve had to do much of that from scratch, reinventing the wheel over and over again. There are some things that I think would have benefited me growing up. Most of all, I wish I’d known that there was a reason why I felt so different from other kids. I wish that I’d been explicitly taught social
skills and rules. I wish that I’d learned how to cope with being bullied and teased. I wish I’d learned how to manage my anxiety. I’ll stop there because it turns out my wishlist is quite long. The advantages of an early diagnosis are huge. So much of what I wish I could go back and give my younger self are the skills that I’ve cobbled together over a lifetime of trial and error. That diagnosis, no matter what age it comes at, is a golden opportunity to better equip ourselves for this journey called life. I am and always have been autistic, with or without a diagnosis. But a diagnosis is a powerful piece of self-knowledge. As surprising at my autism diagnosis was, it was also one of the best things that has ever happened to me. It has given me a starting point for truly knowing and accepting myself as I am: woman, wife, mother, entrepreneur, autistic.
Launch meeting
Wednesday 17th July 2013 - 10am
Women and Girls Autism Spectrum Network • Are you interested in promoting the interests of women and girls on the Autism Spectrum? • Are you a professional involved in the area? • Would you like to link up with others to help raise awareness and educate others about the needs of AS women and girls? If so, join the newly formed Women and Girls Autism Spectrum Network Launch meeting to be held at Autism West Midlands, Regent Court, George Road, Edgbaston, Birmingham B15 1NU. Contact Stephanie for more information at stephanie.boyle0@gmail.com 15
David
Tom
MAKING SPACE FOR FRIENDSHIP Sometimes adults with autism find it difficult to make new friends. Finding social situations difficult can limit opportunities for exploring the community and interests. Creating space for friendship, fun, sharing, challenges and personal development is what befriending is all about. Befriending can open up a range of activities and lead to increased self-esteem and self-confidence. It can reduce isolation and increase independence. We met with two young men who are participating in the project: One as a befriender and one as a befriendee. This is what they told us:
David My name is David and I am 22 years old. I joined the befriending service because I wasn’t really leaving my house very much and struggled to find activities to enjoy outside of my home. I am really interested in music, particularly Finnish metal and I have a huge collection of CDs. I also like computer games and own around 30 different games consoles. I also have a pretty impressive computer set up in my room. The befriending project gave me the chance to try new things, such as bowling, shopping and even sailing! We also went to the cinema to see Rise of the Guardians although this was not my first choice of film. We also have groups with other people from the
befriending project where we can talk about interests and hobbies and discuss pretty much anything we want to. This is really good because it gives me things that I can look forward to without the pressure of having to organise them for myself. I would strongly recommend befriending to other people because it has been really fun and the befrienders are great. We are always asked for our feedback so that activities are tailored to what we want and are interested in. The service has also given me much more confidence in talking to others and taking part in different activities. I am really happy I got to be involved.
Tom My name is Tom, I am a 20 year old psychology student at Birmingham University. I am really into
music but my tastes are very different to David’s! I like swing and jazz music as well as indie, I am Welsh so 16
I particularly like the Stereophonics. I am also quite sporty and, possibly also due to being Welsh, play a lot of rugby. I have really enjoyed being part of the befriending service because it is a great way to meet new people and make new friends. We get to take part in lots of fun activities. I have always enjoyed getting to know new people but this experience has also taught me a lot about autism and shown me first hand that people are totally individual and knowing one person with autism doesn’t teach you anything about another person with
autism. I have enjoyed learning about all the different skills and interests David has, that I didn’t know much about before. I would definitely recommend that other people get involved. The service is extremely well organised and the organisers are sure to tailor activities to suit those involved. We had superb training which was very welcoming and informative and this was really useful to me. However, the best thing about the service is all the variety of people you get to meet and the new things you can learn.
In each issue of Autism Matters our lovely agony aunt, Annie, will answer your questions with helpful advice.
A
The best way to tackle this is a gradual process. Some families I have worked with have seen some success by gradually rewarding for small steps. We have started off by rewarding the child for getting into their bed, then when that is working, rewarding them for falling asleep in their own bed, then finally up to staying asleep in their own bed all night.
Q
My 33 month old son is still in his cot. How can I get him to sleep in his new bed? I’ve been reading to him on the bed and playing on it. I was thinking a chart but he hates stickers. Any ideas?
I suggest remove the cot if you haven’t already. Keep to a strict routine, with minimal response to the child once they have said goodnight, and be consistent throughout the process. This can take from a few days to a few weeks and has to be gradual. The reward has to be motivating to the child so sticker charts may not work. Use the child’s interest and reward instantly so they start to make the connection that the positive behaviour comes with the positive reinforcement. At first it is hard and you may have to spend a few evenings sat at the top of the stairs but it does work! Good luck!
A
I would start by looking at the college prospectus or Googling pictures of the college to help prepare her for what it looks like, and where the entrance is etc. I would then build up very gradually to try and get her to go into the college by herself. Set small aims for your daughter, so for example, could you go with her and wait near the college and ask her to walk to the front doors? You could stand somewhere that she can see you which should help to reassure her. On the second visit could you encourage her to walk further into the college, so walk to 17
Q
How can I help prepare my daughter for transition to college? She won’t look around without me there. Support services at colleges are being patient but time is against us if she’s going to start in September.
the main reception for example. You could even speak to your daughter over the phone while she walks around so that you can offer verbal reassurance. I would then build on this step by step and encourage her to spend slightly longer inside the college each time. Use timetables so that your daughter has a clear plan of where she is going and roughly how long it will take so that she knows what to expect. The college should have a Student Support Worker and it would be a good idea to get in touch with them to see how they can help. Sometimes they are able to do home visits and if this is the case, it might be worthwhile for them to visit your daughter at home. This would hopefully take some of the pressure off yourself, as they would be able to talk about your daughters anxieties and let her know who to speak to when she is worried. They should be able to identify a member of staff who can be your daughter’s mentor. Finally I would ask your daughter to write a list about all the things she is worried about when going to the college by herself. You can then help her to think of a ‘back-up plan’ for each of the worries. So if she is worried about finding her way around the college, her back-up plan could be to take a map, or to identify who or where she will go to ask for support. Knowing that there is a back-up plan for each of her worries, should help her to feel less anxious.
A
Sadly these stories are getting more My three kids, 4,6 and 14 are common as services struggle with increased demands and less money; waiting lists across the in the queue for full assessment region are getting longer and longer. by the specialist teams but our local However this does not mean you CAMHS never return calls, don’t send out should struggle on alone. reports when they say they will and Find out about the service’s complaints barely communicate. What’s the best policy and keep a record of calls unanswered. way to deal? I don’t want to antagonise If you keep things factual and non-personal you people who are “helping” but the stress of are less likely to antagonise staff, many of whom are this has me back on anti depressants very aware of their service’s failures and fully and at my wits end! supportive of parents’ concerns. Contact your local PALS (Patient Advice and Liaison Service) which offers support and information about the NHS and helps resolve concerns or problems (details on the www.nhs.uk website). In the meantime seek out support for the difficulties you are experiencing with your children’s behaviour. In many areas the support offered to families does not come from CAMHS but from other services and is not dependent on diagnosis. If you don’t know how to access services in your area (in many areas these are called Early Help services) contact your local Family Information Service (you will find information about this on your council’s website) or ask your children’s school. AWM’s helpline is also a good source of information and advice, you can contact them on 0303 03 00 111
Q
If you have a question for Annie, please send it to Ask Annie, Autism West Midlands, Regent Court, George Road, Birmingham B15 1NU or email to askannie@autismwestmidlands.org.uk. Annie will do her best to answer all of your questions with helpful advice. 18
JOURNAL CORNER By Dr. Liz Hurley Dr. Liz Hurley is Autism West Midlands’s Research Officer. In this issue of Autism Matters, she’ll be looking at a study which aimed to find out how feedback affected the performance of individuals with Asperger Syndrome. This article can be found in the journal “Research in Autism Spectrum Disorders”, June 2013, Volume 7, Issue 6, Page 785-792. A copy of the article is available in the Autism West Midlands library. The aim of this article was to look at how feedback affected the performance of people with Asperger Syndrome (AS) when they did the Wisconsin Card Sorting Test (WCST). When rules are changed, people with ASD have been shown to persevere longer with incorrect strategies than the typically developing groups. This study looked at whether negative feedback (being told the answer is incorrect) could affect how long a person with AS perseveres with an incorrect strategy. There were two conditions – one where people were told when they were right and wrong (positive and negative feedback) and one when they were only told when they were right (they were given no negative feedback). They found that the AS group had more perseverance errors than the typically developing group when they were given both positive and negative feedback. However, when only given positive feedback, people with AS performed better than the typically developing group (they made less mistakes). This study showed that when doing the WCST, negative feedback (telling a person with AS when they had made a mistake) could have a detrimental effect on their performance (they persevered despite being told they were doing it wrong). Giving only positive feedback allowed them to perform better. The authors could not explain why this happened although they gave three possible explanations: (1) the social interaction (being told the guess was incorrect) was itself reinforcing; (2) because negative feedback does not give information about how to change the behaviour, it prevents them from being able to adapt; (3) there may be non-verbal cues given along with the negative feedback which are not picked up by the AS group and therefore cannot be interpreted.
The Wisconsin Card Sorting Test Cards are sorted according to a hidden rule – the aim is to guess the rule but trying to sort the cards. Every time a guess is made, feedback is given about whether the guess is right or wrong. At any time, with no warning, the rule can be changed. This means the strategy needs to be changed to try and learn the new rule. This tests how long a person perseveres with the old (now incorrect) strategy before they start trying to understand the new strategy.
Although this paper has no direct clinical implications, it does highlight the possibility that giving negative feedback can have the opposite effect and cause the person to persevere in doing the same task incorrectly. This study highlights the importance of monitoring feedback given to people with AS as it may not result in the expected outcome. Although the study above is not directly clinical, it highlights some strategies which could be tried when working with people with Asperger Syndrome (or another ASD): • If you work with someone with Asperger Syndrome (or another ASD), think about how they respond to your feedback (in particular negative feedback). Do they persevere with doing something wrong, even when you tell them they are doing it wrong? It may be worth trying a new strategy and only telling them when they are doing things correctly, or changing the way feedback is given, to make it positive. • If you are a parent, have you noticed that your child does not seem to respond when you tell them they have done something the wrong way? Why not try giving only positive feedback to see whether this helps them to learn to do things correctly? Everyone with autism is different so this may not work in your particular case but it is a simple and interesting strategy to try! For further information, please contact Liz Hurley on elisabethh@autismwestmidlands.org.uk.
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West Midlands Support Groups Birmingham South Birmingham ASPire Support Group Joanne Gumbrell joanneg@autismwestmidlands.org.uk 0121 4507582
Dudley Dudley Autistic Support Group Neale Pilkington nealepilkington@blueyonder.co.uk 01384823487
Parent Support Group - Asperger Syndrome Mike Pinsent contact@theirstory.co.uk
TOADS (Adults and Adolescents) Sandra Croot 01384279621
Acocks Green AWM Support Group Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582
Walsall Walsall Support Group (Younger Children) Heather Spurr mikespurr@fsnet.co.uk 01213532710
AS Partners Jenny Moore aspartnerswestmids@yahoo.co.uk 07875299304 North Birmingham ASPire Support Group Joanne Gumbrell joanneg@autismwestmidlands.org.uk 0121 4507582 Kingstanding Support Group Stephanie Higgins steph@hskingstanding.co.uk 01212588303 Great Barr AWM Support Group Sarah Jane Winch sarah-janew@autismwestmidlands.org.uk 0121 4507582 Sutton Coldfield Autism Support Group Victoria Roche victoria-roche@sky.com 07905654632 Central Birmingham ASPire Support Group Joanne Gumbrell joanneg@autismwestmidlands.org.uk 0121 4507582 Yardley ASD Support Group The Greens green43@blueyonder.co.uk 01216842226 Autism Plus Support Group Maura Perry tlpph@yahoo.co.uk 01213546777 Birmingham North Support Group Tina Martin 01213550015 Special Needs Awareness Group (SNAG) Jackie Simmonds jackie@middlemore.co.uk 01214279791 Spectrum Support Group - Sheldon spectrumsupportgroup@blueyonder.co.uk Sandwell Sandwell ASPire Support Group Joanne Gumbrell joanneg@autismwestmidlands.org.uk 0121 4507582
The Grove Parent Support Group Debbie Lipton 01785 356412 office@thegrove.staffs.sch.uk
Rugby AWM Support Group Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582
Burntwood DASH (Discover Autism Support Here) Wendy Smith 0759 9062 633 wendysmith_581@fsmail.net
Stratford Upon Avon District Branch Karen Varga stratforduponavon@nas.org.uk 07500881831
Lichfield Aspergers’ Parents Support Group Helen Hartshorn 07770656628 aspergers@bbdpl.co.uk
Autism Sharing & Caring (ASC) Sue Ebbans parentpartnership@walsall.gov.uk 01922650330
Whits End 07757246633 whits-endlichfield@hotmail.co.uk NAS Tamworth Parents Group Sharlene Davies 07500 089 529 sharlene.davis@nas.org.uk
Wolverhampton Support group for adults Contact Vanessa Frost 01902 652933 or email supportaas@hotmail.co.uk
Staffordshire ASD Parent Support Group Caroline Heath 01283 521 408 or 07855 276 566 chocolatecaz@talktalk.net
Group for Children with Autism Contact Laura Plant 01902 877550 lplant@spurgeons.org
Harmony Group Tracey Holmes 07941015497 tracyholmes@harmonygroup.co.uk
Shropshire Spectrum Jeannette Griffiths netgriffiths@gmail.com 07852691774
West Hill Primary School Marguerite Gleave 01543 5122 00 office@westhill.staffs.sch.uk
STACS (Asperger Syndrome) Barry Brown 01952254594
Peton First School Sarah Alford Sarah.louise.alford@googlemail.com
Telford Group Tina Bentley Rogers 07521295591
St Nicholas ASD Parent Supprt Group Donna Parker 01902 434 126 office@stnicholas.staffs.sch.uk
Autonomy (Young people/adults with AS) autonomyshropshire@yahoo.co.uk 01743 821363
Lifeworks Staffordshire 01782 615 222 lifeworks1@btconnect.com
Staffordshire Stafford Saturday Play club Mandy Binns mandy.binns.uk@googlemail.com 01785 665232 or 07944001606
NSAAA (North Staffs Asperger/ Autism Association) 01782 627 002 info@nsaaa.co.uk
Stafford AWM support group Sarah Jane Winch sarah-janew@autismwestmidlands.org.uk 0121 4507582
Warwickshire Nuneaton and Bedworth AWM Support Group (Parent/Carer) Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582
Jigsaw support group Machita Denny machita_denny@btinternet.com 07882 823954
Coleshill AWM Support Group Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582
North Staffs Asperger Autism Association 01782 627002 info@nsaaa.co.uk www.nsaaa.org.uk
Coventry Coventry Support Group Mary O’Hagan cafag@yahoo.com 02476222958 Coventry Support Group Phillip James phillip.james70@ntlworld.com 02476222958 Get Together - for people with autism/ aspergers and their families Claire Vyse info@gettogether.uk.com 02476367479 Coventry Asperger Group (Adults) Colin White rayrichmond@yahoo.com 07953151665 Solihull Solihull ASPire Support Group (adults) Joanne Gumbrell joanneg@autismwestmidlands.org.uk 0121 4507582 SASSI - Autism Parent Support Group Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582 Solihull ASD Siblings Support Group Kerry Purnell purnellkerry@hotmail.com 07734734907 Worcestershire Spectrum Club (Young People on the spectrum 13-19) Tina Mason-Williams t-masonwilliams@btinternet.com 01323762024 WaASP (Adults) David Thain davethain@gmail.com 07518365212 Bromsgrove & Redditch Support Group Charmain McCrossin charm.bluebell@blueyonder.co.uk 07981011362 AS Active Francis Musgrave info@asactive.org
Leamington AWM Support Group Katie Oliver katieo@autismwestmidlands.org.uk 0121 4507582
Staffordshire Adults Autistic Society 01782 617088 or 07751 223065 infosaas@ntlworld.com www.saas.uk.com
Registered Charity Number 517077 Registered Company Number 1953344 (England & Wales)
www.autismwestmidlands.org.uk 20