Read an extract from The Autism Spectrum Guide to Sexuality and Relationships by Dr Emma Goodall

9781849057059

Dr Emma Goodall’s excellent new book The Autism Spectrum Guide to Sexuality and Relationships: Understand Yourself and Make Choices that are Right for You is a candid guide to sexuality, relationships and gender identity that will help adults on the autism spectrum to understand their preferences and identity in the pursuit of platonic, romantic or sexual relationships. In this extract Dr Goodall introduces the idea of what sexuality might look and feel like for someone with autism.

Click on this link to read the extract >>>  Understanding Your Own Sexuality – Goodall

The Autism Spectrum Guide to Sexuality and Relationships by Dr Emma Goodall is available now from Jessica Kingsley Publishers

Paolo Hewitt describes the talk he gave about growing up in Burbank Children’s Home

Hewitt_But-We-All-Shin_978-1-84905-583-3_colourjpg-printPaolo Hewitt, author of But We All Shine On and The Looked After Kid, was in Woking last week, the town of the children’s home in which he grew up, to give a talk about his experience in care, and how his personal journey as an adult to discover whatever happened to his close childhood friends led him to write these two, highly moving and inspirational books.

As soon as I walked into the room the nerves kicked in. I had been fine up until that point but the sight of maybe 100 people ready to hear me read and talk about my time in care switched the dial.

It was then I recalled some advice given to me many years ago before a similar event. I was told there was no reason to be nervous. People who were there to hear me read were on my side. They were not against me, they were for me; they wanted to see me succeed. The crowd was not hostile; they were onside. So why be afraid? Continue reading

We talked to Veronica Bidwell about her new book, ‘The Parents’ Guide to Specific Learning Difficulties’

Bidwell_Parents-Guide-t_978-1-78592-040-0_colourjpg-printPacked full of advice and practical strategies for parents and educators, this book is a one-stop-shop for supporting children with Specific Learning Difficulties (SpLDs).  We talked to Veronica about how she came to write the book, about her long experience as an Educational Psychologist, and what advice she has for parents whose child has an SpLD. 

What inspired you to write this book?

I always wanted a book that I could give to parents which they could use for reference.  I wanted a book that would explain the various learning difficulty labels, and one that would provide advice and support.  It has been difficult to find such a book, so I decided to write it myself.

For most parents it can be really daunting to find that their child has a Specific Learning Difficulty (SpLD) and that they will need to roll up their sleeves and get to work.  Unlike teachers and other educational professionals, parents have had no training.  It can be hard for them to know where to start.

Parents need guidance.  My hope is that this book will be of help.  I hope it will provide encouragement and that the stories included will inspire optimism. Continue reading

Shibley Rahman talks about his book, Living Better with Dementia

shibley

Identifying current global policy challenges for living well with dementia, this book tackles controversial topics at the forefront of public and political debate, and highlights pockets of innovation and good practice from around the world to inform practical solutions for living well with dementia in the future. We talked to Dr Rahman about the book and his thoughts on the current process of dementia diagnosis. 

What motivated you to write Living Better with Dementia?

The name of the only national dementia strategy for England so far was ‘Living well with dementia’. This name is problematic, as it potentially sets people up to fail. What if a person has a bad day? We’re all entitled to have a bad day.

The actual strategy expired in 2014, exactly five years after it was launched by a previous government in 2009. I wanted to keep with the ethos that it is possible to aspire to live as well as possible with dementia. The prism of long term conditions suits people with dementia much better than the approach which relies solely on drug treatments.

The title of the book, Living Better with Dementia, is in fact from Chris Roberts, living with mixed dementia of the Alzheimer type and vascular type. I am honoured that Chris wrote one of the forewords. Kate Swaffer, Chair of Dementia Alliance International, wrote the main foreword.

There has to be an alignment of rhetoric and reality. That’s why I respect the work of Beth Britton who wrote the final foreword. Beth has an intimate lived experience of dementia from family, and professional experience in how this impacts on actual care. The topics of my book give a realistic state-of-the-art exploration of key themes in wellbeing in dementia, not entrenched in dogma, but which promote awareness and education.

What advice could you give to those who are caring for someone with dementia?

Above all, I think it’s crucial to see the individual person – his or her past as well as current beliefs, concerns and expectations – beyond the label of a medical diagnosis of dementia. The diagnosis itself can have a marked effect on identity, and the approach should be one of trying to promote as fulfilling a life as possible. This is called ‘enablement’. I don’t think dementia care is solely a healthcare system issue, though there are some caveats. Firstly, people with dementia do also have other medical health issues, both physical and mental, and it’s important they’re identified and managed regardless of care setting (e.g. home, care home, hospital or hospice). Carers have complementary needs too, including ‘coping strategies’, which need addressing, and Admiral nurses are especially relevant here.

Secondly, the entire ecosystem should be revved up to providing an inclusive and accessible environment for people with dementia and their significant others, including close friends and family. Such dementia inclusive communities, with national programmes such as Dementia Friends, are an important first step.

Finally, there needs to be an acceptance in care that dementia is a terminal illness, and this has consequences for the organisation and for care services, such that people with dementia have equitable access to palliative services too.

What changes would you like to see to the current process of dementia diagnosis?

We are, overall, in a better place compared to where we were in England regarding dementia diagnosis. The issue back in 2009 was a massive diagnosis gap, which has successfully been closed in subsequent years through the collaborative efforts of greater societal awareness and substantial proactive work from the medical profession. Whilst the timing of the diagnosis has to be sensitive, and also given in a timely way and appropriately person-centred, there’s no doubt there is little benefit for people languishing without diagnosis. The lack of better pharmacological treatments for the 100+ different types of dementia should not promote an attitude of living with rather than dying from dementia.

However, I’d say the two particular under-addressed issues in the diagnosis policy is making sure that we have better recognition of people with dementia which comes on before the age of 65. This is defined as ‘young onset dementia’, and tends to be a set of conditions which quite often do not present initially with memory problems. We therefore need to up-skill an already stressed workforce, including primary care and GPs.

The second issue is making sure we have equity of diagnosis from people from all communities, including black Asian and minority ethnic communities, as well as people from other backgrounds, including LBGT sexuality.

You’re an active member of the dementia community. What do you have planned for the coming months?

 I am currently writing my second book on the ‘hot’ topic of integrated care of dementia in England, including care at home, hospices and hospitals. This is an issue often referred to as ‘right time, right care, right place’, and is a very relevant issue given where NHS England currently finds itself. The book will draw on best practice from other jurisdictions, however.

Any final thoughts for our readers?

 Do not view dementia as an issue irrelevant to you. In fact, most people know someone living with dementia, or at least someone who knows someone with dementia. Take part in activities such as Dementia Friends beyond Dementia Awareness Week, but also acknowledge the needs of carers, supported through organisations such as tide (together in dementia everyday). Above all, learn as much as you can about dementia, from anyone, from anywhere. Some of it will be rubbish, but you’ll soon get a feel for what reliable sources of information are. I believe, essentially, a massive step forward for dementia is, as somebody else might put it, “education, education, education”.

 

You can find out more information or buy the book, Living Better with Dementia, here.

Follow Dr Rahman on Twitter here.

Supporting children with attachment difficulties in school – Nicola Marshall

Marshall_Teachers-Introd_978-1-84905-550-5_colourjpg-printIn this article, Nicola Marshall, author of The Teacher’s Introduction to Attachment, reflects upon the role schools play in supporting children with attachment issues, and how they can improve their education experience.

It’s Mental Health Awareness Week at the moment with a focus on relationships, so I thought I’d use this theme as an opportunity to talk about children with attachment issues, and how schools can improve the level of emotional support they receive.

As an adoptive parent who runs a practice training teachers on attachment and why it matters, I have gained many years of insight into the highly pressured, results-driven environment that our education system increasingly imposes upon our schools today.

I’m very aware that for ‘typical’ children who have the love and support of at least one of their parents, school and the pressures of grades and exams can be overwhelming too.  But for children with attachment difficulties, the expectancy to perform well in school only compounds the numerous emotional problems that they are already facing.

Continue reading

A learning resource from ‘Being Me (and Loving It): Stories and Activities to Help Build Self-esteem in Children’

Richards-Hague_Being-Me-and-Lo_978-1-84905-713-4_colourjpg-printDownload an activity-based learning resource from Naomi Richards’ and Julia Hague’s new book Being Me (and Loving It); it includes a story about a boy named Noah for students to read, notes for the educator to guide the lesson, as well as other follow-up activities.

With 29 real-life and relatable stories at its heart, Being Me (and Loving It) is designed for teachers, youth workers, educators and parents supporting children aged 5-11.  Each inspiring story is the focus of a ready-to-use lesson plan and covers the most common self-esteem and body image issues affecting children today, and provides advice on how to support them.  The stories can either be read aloud or photocopied and shared for individual reading.  It is an ideal resource for use in PSHE lessons or in one-to-one settings, including at home.

Click here to access the resource

An interview with Kathy Hoopmann & J.S Kiss, authors of the award-winning childrens novel Elemental Island

Hoopmann-Kiss_Elemental-Islan_978-1-84905-658-8_colourjpg-print

Elemental Island is the first written collaboration between bestselling author of Blue Bottle Mystery & All Cats Have Asperger Syndrome Kathy Hoopmann & exciting new JKP author (Judit) J.S Kiss. In this interview for the JKP Blog they discuss challenging the stereotypes around autism, bridging the gap between mainstream and special ed and winning the Silver Nautilus Award for middle-grade fiction.

Continue reading

Living Beyond Dementia – an interview with Kate Swaffer

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Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In her book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. We caught up with her to find out a bit more about the book and the experiences that motivated her to write it. 

What made you want to write ‘What the Hell Happened to my Brain?

Following the diagnosis of dementia, for the first few years whenever I attended something to learn more about dementia, it was always people without dementia telling me how and what I was feeling, what was happening to me, and also what was best for me. At no time, did anyone bother to ask me. I suppose, that is really what started me writing about living with dementia as I was sick of it, and could not believe (still cannot) people without dementia felt they could truly believe what it is like being diagnosed and living with dementia. On top of that, the public narrative and discourse is still almost always about suffering, and although I do suffer some of the time (from dementia and other ailments), it is not the sum total of my experience, so I wanted to share that it is possible to “Live Beyond Dementia.”

My blogging was also a way of cataloguing my daily experiences and thoughts, and very quickly became a communication tool between family and close friends, and then the wider dementia community, as well as a memory bank for me to go back to. So the habit of writing now, almost daily, for more than four and a half years, also gave me the discipline and practice to write a book.

Since your diagnosis, have you experienced a change in society’s attitude towards those with younger onset dementia?

I have noticed, perhaps in the last 6-12 months, a slight change in attitudes and awareness, but still, many people without dementia insist on writing or speaking about ‘our’ experiences of living with dementia, and inflicting their experience of suffering onto us, as if it is our experience. It is ‘our’ story to tell, and I feel even family care partners who speak out, should limit it to their experience of being a care partner, not talk about our experience of living with dementia. After all, whose story is it? It would be like me writing about my sons experience of living with Cerebral Palsy (if he had that) – it would be ok to write how it felt as a mother to have a son with CP, but not ok to write about his experience of living with it. Amongst other things, this, and the stigma and discrimination are what fuel me to keep working on our human rights to full inclusion in civil society.

What would be your best piece of advice for others who are living with dementia?

My advice is to IGNORE the Prescribed Disengagement® you will be given, and reclaim your pre diagnosis life; demand support to continue to live YOUR life independently for as long as possible, with strategies and support for the disabilities that the symptoms of dementia cause. It is a human right to be supported to live, not only to die. Universities automatically support students with disabilities – so why doesn’t the health sector. Dementia is the only disease I know where we are simply told to get our end of life affairs in order, but with no support for it being a terminal illness, then told to get acquainted with aged care, and go home and give up. This is not only unpalatable, it is unethical…

You’re a very active advocate for living beyond dementia – what have you got planned for the coming months?

My next few months and years are already filled with living! I am a first year PhD candidate at the University of Wollongong, as well as the Chair and CEO (and co-founder) of Dementia Alliance International, now the peak body for people with dementia, and the global voice of people with dementia. I will continue to blog when possible, I have at least one more book to write, as well as to continue to write and publish poetry books. My second and third volumes of poetry are being released later this year by Ginninderra Press. Of course, I will always continue to advocate for the human right of all people with dementia to be equally included in everything that is about them. And if my dementia progresses and I cannot achieve my current goals, then there probably is nothing I can do about it, but I will not die without fighting for my life!

Any final thoughts you’d like to share with our readers?

I hope that reading my book illuminates the need for the voice OF people with dementia, the inclusion OF people with dementia, and in particular highlights what can be achieved post diagnosis WITH rehabilitation and real support for disabilities.  Through the online support groups that Dementia Alliance International hosts for people with dementia, we meet people who have quite literally been told to go home and give up, as I wasn’t, and who are struggling to find the motivation to get out of bed each day. After being with others who are living beyond dementia, it gives me the most joy in my life to see them wanting to reclaim their lives again. This is the absolute power of peer to peer support groups, and is also why I push so hard to live beyond dementia. For anyone living with a diagnosis of dementia, you can join DAI here: www.joindai.org

For more information or to purchase a copy of ‘What the Hell Happened to my Brain?‘ click here.

Follow Kate on Twitter – @KateSwaffer

Diana Hudson provides useful exam time tips for parents whose child has a Specific Learning Difficulty

Hudson-English_Specific-Learni_978-1-84905-590-1_colourjpg-printSpecific learning Difficulties (SpLDs) include conditions such as dyslexia, dyspraxia, dyscalculia, attention deficit disorder (ADHD) or autism spectrum disorder (ASD). Exam time is stressful for all students but those who have Specific Learning Difficulties may find it a time of great anxiety and despondency. Often these students have a history of underachieving in test situations and so they feel worried, depressed and lacking in self-confidence. They may fret about remembering material accurately, misreading questions, failing to understand instructions and mistiming answers. Even getting to an unfamiliar exam room can be a source of worry.

So what can teachers and parents do to support them? 

Adults can make a big difference in keeping the student’s morale high and  can help them to plan and pace their work with time for relaxation.

1. The run up time; encourage students to plan ahead and keep a calm, balanced approach

• Have at least one copy of the exam timetable visible in a prominent place
• Help the students to make a realistic Revision timetable and factor in any other important events, such as birthdays or planned outings, to the revision timetable
• Include a few things to look forward to – a football game, concert, trip with friends
• Do they know where the exams are being held? Student who get lost easily may feel happier if they visit the room first, especially if it is a different room to the main hall used by most students

Make Revision varied and keep it interesting

• Encourage the use of multisensory techniques to revise
• Help the student to find their own best learning channel : auditory, visual, kinaesthetic
• For most people a combination of methods works best. It relieves boredom and keeps the brain actively engaged

Learning style Revision methods

Learning style Revision methods
Visual Left brained: Write out bullet point notes; highlight key words; mnemonics; make posters of phrases, key words or formulae

Right brained: Mind maps; cartoons; drawings; flow charts; time lines; use coloured pen or coloured card; make posters illustrating facts or associated ideas; use computer programmes

Auditory Listen to tapes of set books; read information aloud; self-record and play back, revise with a friend asking and answering questions; convert facts into song, raps, rhythms, poems
Kinaesthetic  Use practical examples; let everyday items represent the topic material in order to understand concepts- e.g. a battle scene could be played out with different coloured paper clips; make 3D diagrams; walk about and recite; lie on the floor; stand on one leg to say French verbs; handle equipment; use inter-active computer programmes

Encourage student to:

• Revise in short bursts
• Vary the approach and subject frequently
• Set up a fixed place to work that is free from distractions where books and materials can be left undisturbed
• Switch mobile phones off
• Use each subject’s syllabus to guide revision
• Summarise key points in a handy way for quick referral
• Find innovative ways to keep the work fun
• Do practice questions ideally with mark schemes to check answers
• Learn to identify and interpret key instruction words such as describe, explain, compare, contrast, evaluate, criticise, summarise

Factor in relaxation and rewards

• Keep reward times such as doing a hobby or watching a favourite programme in the schedule
• Teach relaxation techniques
• Sport: this is good for health and wellbeing; exercise releases endorphins and improves blood flow to the brain
• Ensure they have a good balanced diet
• Adequate sleep is very important

2. Special exam provision

Students who have been assessed as having an SpLD may be eligible for special exam arrangements. The school SENCO (Special Educational Needs Coordinator) will organise these arrangements which could include:

• Extra time
• Use of ICT
• Coloured paper
• Enlarged script
• Readers
• Separate room

3. The night before – encourage students to:

• Have an early night
• Avoid long phone / social media conversations with peers
• Look at key points / summaries only – not the whole syllabus
• Exercise
• Organise equipment, pencils, pens, calculator etc. in the correct transparent bag
• A bottle of water or a small snack may be allowed
• Check transport arrangements for the morning
• Have a nice meal not too late
• Double check timing of public exams
• No electronic gadgets in bedroom

4. On exam day students should:

• Get up in good time
• Eat breakfast
• Pick up their equipment
• Get to venue a little early to give time to relax

5. Useful techniques for during the exam:hudson new

• Relaxation techniques at the beginning – wiggle shoulders and ankles, breathe deeply
• Make sure they can see (and read) a clock; some students find digital clocks easier to work with so they may need their own on the desk
• Read exam instructions carefully, twice! How many questions should be answered? Should questions be taken from different sections? This is a common source of error
• Plan the timing of long essay answers
• Read key instruction words in questions carefully, use highlighters or underline to emphasise them
• Plan the content of long answers, frequently making sure they relate to the title
• Check answers at the end

6. Afterwards – suggest that students:

• Avoid post exam mortems with friends
• Don’t dwell on mistakes. People tend to remember the things they did wrong not the bulk of things that went well
• Do something different for a while to de-stress; fresh airs, exercise, listen to music
• Enjoy crossing it out on the timetable
• Gear up for the next one remembering that they don’t last forever!
Diana Hudson is the author of Specific Learning Difficulties- What Teachers Need to Know

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