YOUR Winter 2020
Employment special
Tips for finding the right job
‘Tis the season
Toys for non-verbal children
Nature trail
Young author Dara McAnulty
Plus
Making Christmas special, and autism and pregnancy
YOUR Winter 2020
Fiona’s transport tips
30
Adult diagnosis
32
EDITOR Suzanne Westbury YourAutismMag@nas.org.uk Contributors Hermione Cameron, Tracey Lattimore HEAD OFFICE National Autistic Society 393 City Road London EC1V 1NG Tel: 020 7833 2299 www.autism.org.uk SUPPORTER CARE TEAM 0808 800 1050 membership@nas.org.uk ADVERTISING James Pembroke Media Tel: 0203 859 7098 hoby.abdel@jamespembroke media.co.uk SUBSCRIPTIONS Only available to members of the National Autistic Society. To join, visit www.autism.org.uk DESIGN AND PRODUCTION CPL (Cambridge Publishers Ltd) 01223 378000 www.cpl.co.uk 1 Cambridge Technopark, Newmarket Road, Cambridge CB5 8PB PRINT Warners Midlands 01778 391000 National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG
Azzy loves messy play
14
Contents What’s new?
04
Readers to the rescue
26
“Nature gives me hope”
08
Using public transport
30
My diagnosis
12
Adult diagnosis
32
Our toy stories
14
Meet the team
37
Employing autism
18
Notebook
39
I’m a... pop star
42
A round-up of the latest news
Meet naturalist Dara McAnulty
Jackie’s late discovery
How autistic children play
Dame Stephanie Shirley on finding the right job
Creating opportunities
21
The views expressed in Your Autism and any enclosures or advertisements are not necessarily those of the National Autistic Society. In the interest of providing readers with the widest range of information, we may include details of some of the many approaches to autism. However, this does not imply our charity’s endorsement of any particular approach or product. The inclusion of a website does not necessarily imply that our charity endorses or supports the group or individuals running the website, nor does the absence of a website imply that our charity does not endorse or support the group or individual running the website.
Autism and pregnancy
22
Advice for mums-to-be
Learn about travel training
All about adult assessment
We talk to our Northern Ireland Director Shirelle
Things to read, do and see
© Your Autism magazine Winter Vol 54, No 4 National Autistic Society ISSN 2055-0413
Our Autism at Work programme
How to make Christmas special
Introducing Kale Harris-Herbert
study showed a link autistic traits original ideas
A recent between and
18
Winter 2020 3
What’s new?
Get in touch!
Our round-up of the latest news and views
Left stranded report makes its mark Thank you to everyone who contributed and responded to our Left stranded report, highlighting the challenges you have faced during the pandemic. As stated in the last issue, our report found: ● Nine out of 10 autistic people worried about their mental health during lockdown, and autistic people were seven times more likely to be chronically lonely ● One in five family members had
to reduce work because of caring responsibilities ● Seven in 10 parents said their child had difficulty understanding or completing school work, and around half said their child’s academic progress suffered. More than 11,000 of you have now signed our follow-up letter to Chancellor Rishi Sunak, asking him to fund the support, services and understanding that autistic adults and children need. The report has also been recognised in the media – with coverage in The Times and Telegraph – and in parliaments across the UK. In Wales, Mark Isherwood MS asked the First Minister what the Welsh Government would do to implement
Well done to our London Marathon heroes A massive thank you and congratulations to our 85 brilliant virtual London Marathon runners! Our Team Autism heroes ran the 26.2 miles in wet weather on 4 October, raising more than £160,000 to help autistic people and their families. Mark Smith (pictured), from Cheltenham, raised £927 and said: “So chuffed with my time of 3hrs 29mins. Massive shout out to my wife for
4 Your Autism
organising a huge support team of mates to cheer me on and run key bits with me. There was a big smile on my face as I crossed the makeshift finish line.” Thank you to everyone who is fundraising at this time and helping us continue our vital work creating a society that works for autistic people. Take a look at our virtual fundraising ideas at www.autism.org.uk/raisemoney
Left stranded:
The impact of coronavirus their on autistic people and families in the UK
the report’s recommendations. The First Minister acknowledged the impact that coronavirus has had on autistic people, and said the government would start consulting on the new Code of Practice on the Delivery of Autism Services. On the back of the report, our Northern Ireland Director, Shirelle Stewart, has also given evidence to the Education Committee. Shirelle told the committee members how autistic children and their families were suffering because of schools not allowing them to return. We are here to support you. Find the latest guidance, updates and resources at www.autism.org.uk/ coronavirus
News
Introducing our Autism Inpatient Mental Health casework service We launched our Autism Inpatient Mental Health casework service for England on 1 September, and it has already helped many families, one of whom has been in touch to say that their child has been discharged from hospital. Despite years of promises from government, hundreds of autistic people are stuck in inpatient mental health hospitals instead of living full lives in the community, near their family and friends. We continue to campaign to stop this scandal, highlighted again in the CQC’s latest report (page 6). Our new service gives confidential advice and support to autistic people – or their families – at risk of going into or getting stuck in inpatient units. We can advise on mental health rights and entitlements, to help prevent or challenge detention and secure the care and support autistic people need in their communities. Isabelle Garnett’s son Matthew spent 15 months under section in a secure unit and was only released after his family’s high-profile campaign. Isabelle played a central role in the development of our new casework service. She said: “When my son reached a predictable and preventable crisis point, and was inappropriately admitted to inpatient mental health units, it resulted in catastrophic consequences for him and our family. I felt powerless to protect my child and didn’t know where to turn to for advice to get him the ‘right support’ in the community. I could not be more pleased the National Autistic Society has launched its much-needed casework service. I have no doubt it will be life-changing, and help make ‘homes not hospitals’ a reality for autistic people.” Contact the Autism Inpatient Mental Health casework service at www.autism.org.uk/ Matthew and Isabelle inpatientsupport
Magazine survey
It’s very important to us that this magazine provides you with information and advice that’s relevant to you. We’ve just launched a readers’ survey and it would be great if you could complete it to help us understand how we can develop your magazine in the future. Please share your views at www.autism.org.uk/ yasurvey2020 by Friday 15 January 2021.
Autism YOUR
Summer 2020
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YOUR Summer 2020
Making music Pianist Rachel Starritt’s story
Homeschool your child Teaching tips to help you both
Autism and art
Creativity to aid expression
Plus
Coronavirus latest, managing anxiety and advice for carers
28/04/2020 15:26
Autism Summer 2020_01
Cover.indd 1
Planning for your child’s future?
Our Wills and Trusts Phone Service is run by solicitors who can talk through your options, answer your questions and provide the information you need before starting to make your arrangements. The service is free and operates on a call-back basis on Fridays from 11am-1pm. To book an appointment, please complete our web form at www. autism.org.uk/willsandtrusts or call our Supporter Care team on 0808 800 1050.
AGM change
This year’s annual general meeting (AGM) has been postponed until 23 January 2021 – and, because of potential lockdown restrictions, this will be an online event. As always, the AGM will be free to attend. We’ll contact you in the next couple of months with details of how to register.
Christmas cards
Our Christmas cards are out now, and we’ve got some fantastic new designs. Order them from www.
charitycardshop.com/nas
Winter 2020 5
News
Save the date for World Autism Awareness Week 2021
We are pleased to announce that World Autism Awareness Week 2021 will take place between 29 March and 4 April 2021. We can only provide people with life-changing guidance and change society’s attitudes because of people fundraising. To talk through fundraising ideas, contact fundraising@ nas.org.uk
Congratulations to Siena Autistic teenager Siena Castellon, who wrote the ‘Back to school’ article in our September issue, has been selected from 7,000 candidates to be a United Nations Young Leader. She told us: “The United Nations programme seeks to build peaceful, inclusive societies that ensure noone is left behind. As a Young Leader, I hope to help bring about disability inclusion and to shine a light on autism awareness. I plan to dedicate myself to addressing many of the inequalities and barriers that negatively impact the autistic community, including access to support services, the special educational needs and disabilities school crisis, disability hate crimes, and the lack of employment opportunities.” Meanwhile, well done to our members Perdita Langhorn and Lisa Upshall, who won a signed copy of Siena’s book, The spectrum girl’s survival guide: how to grow up awesome and autistic, in our autumn issue competition.
CQC calls for change Too many hospitals for autistic people or those with learning disabilities are providing poor care, which – at times – is undignified and inhumane, according to a new report from the Care Quality Commission (CQC). The CQC found physical restraint part of the culture in some places, and cases of patients secluded or segregated for 13 years. A lack of suitable care in the community was preventing the discharge of 60% of people the CQC saw during its review. The Out of sight – who cares? report has called for better capacity in the community, and across education, health and social care, to provide earlier
6 Your Autism
Out of sight – who cares? A review of restraint, seclusion and segregation for autistic people, and people with a learning disability and/or mental health condition
care and prevent people from being admitted to hospital. Our Director of External Affairs, Jane Harris, said: “If each area puts in place the right social care and housing services, hundreds of autistic people won’t need to go into hospital in the first place. We fully support the CQC’s call for a single national commissioner and minister to make sure this happens.” Read more at www.autism.org.uk/cqc-review OCTOB ER 2020
Interview
“Nature gives me hope and enthusiasm” Dara McAnulty’s book, Diary of a young naturalist, has won the Wainwright Prize for Nature Writing 2020, and judge Julia Bradbury said it should be on the national curriculum. We met Dara to talk autism, nature and family What is being autistic like for you?
I’ll start with the positives. I feel the world in a very intense manner. That has given me this very concentrated view of the world where everything sort of rushes at me at once. Feeling everything that happens that bit more has always been really important to me. I guess the
downside is I feel things far too much sometimes and I just want to curl up in a ball. I get overwhelmed and go into complete mental breakdown when things get too much. The exact thing that I love so much can cause me a great deal of pain. Feeling the world more intensely leads me down eternal rabbit holes
Dara, 16, pictured with our ambassador Chris Packham, is passionate about wildlife. He has appeared on Springwatch and Countryfile and is the youngest winner of the RSPB Medal, presented to an individual in recognition of wild bird protection and countryside conservation
8 Your Autism
where I’ll just pursue a single area that’s completely irrelevant to what I’m supposed to be doing, because I want to get to the end of the tunnel. It’s another blessing and curse – the blessing being that I can really focus on a single task until it’s done. But I would never be any other way, I don’t know any other way.
Your family are all autistic, except your dad. How do you support each other?
Every single day, my mum has helped me and my brother and sister learn how to cope with the human world, and given us her guidance as an autistic person who has gone through the system. That has been really instrumental in how I look at the world, how I’m able to survive it. Then you have my dad, who’s an ecologist and conservation scientist. He’s the one who keeps us grounded in reality so we don’t go around doing stuff – especially me – that makes absolutely no sense. My brother Lorcan loves the mountains and the adrenaline rush you get in those places. Then we have Bláthnaid, she’s the youngest and she explores everywhere and loves insects. As a family, we are really, really close. I say in the book, we’re as tight as otters making our way in the world. I have to mention Rosie as well. She’s our rescue greyhound, and we all love her.
Elaine Hill
Interview
It gives me that opportunity to express myself once I’m out, in a way that I can’t really do with anything else
Have you always been interested in nature?
Yes, 100%. I have been out in nature all my life, picking up conkers and feathers and all manner of weird and wonderful artefacts you find in the urban sprawl of a city, staying out long hours in the park and basically spending all of my time outside when I could. And the fact that I was able to do that at a
young age built in me a requirement to be out in nature, and that has been an integral part of my life.
You say in the book – “wildlife is my refuge” and “wildlife never disappoints like people can”. Can you describe how nature makes you feel?
When I’m out in nature, everything is a lot calmer. There’s no rush of the
human world pushing me forwards and, alongside that peace and tranquility, there’s no judgement. There are no requirements or stress or necessary actions to really experience nature. For me, that is relieving and gives me that opportunity to express myself once I’m out, in a way that I can’t really do with anything else, because everything else is bound to the human world. And, quite a lot of time, I find the human world to be incredibly stressful. To be able to escape that world is a part of how I make my way through life, and how I get my brain reset after every week, to get myself into some state of functioning. Winter 2020 9
Interview
You took part in the school strikes against climate change – what’s your message to our leaders about climate change and protecting our world?
My message to the Government is, listen to what the scientists are saying, because they’ve studied in their field for years. Go with the plans they wish you to pursue, because they know their stuff. And try to make changes to the education system. I’ve always felt it’s like a factory churning out battery chickens, and that doesn’t feel like a proper way to run a society, where your main aim is – within a lifespan of human existence – to get a job and go through your life, breaking even almost. That doesn’t seem very productive to me. We need to sort out these environmental issues that are going to affect generations down the line because, if we don’t, that’s as good as condemning them to a world that isn’t even liveable, and that feels like a crime to me. That almost feels like murder. So, listen to the experts, reform the education system to make it easier to learn about the world around you, and do proper critical and analytical thought.
In your book, you describe your move to a new school. What was school like for you before? Absolutely horrific. Two schools back, I was bullied every single day for being different. I wasn’t well in my classes; I was sick all the time. I was not feeling safe or looked after or in any way comfortable in the school environment. Things are much better now. My new school is open and inclusive to everybody, and I think that’s so important, to have open arms to everybody who is in your community. That 10 Your Autism
Dara exploring with brother Lorcan and sister Bláthnaid
spirit for me, of people working together to provide a better future for everybody, is something I can really get behind.
What’s your advice to other autistic teenagers who may be struggling at school?
Just try going out into nature, as it gives me eternal hope and enthusiasm and willingness to go about my daily life. It gives me a way to escape that intense and overwhelming human world and
manage to navigate it. Going out into a park or open space helps me, and maybe it will help you, too.
Which subjects are you studying and what do you want to do next?
I’m studying biology, chemistry, maths and politics A-levels, and want a career somewhere in the realm of biology. I want to put off specialising as long as possible so I get to do as much as possible in the time I have to learn.
Dara’s descriptions Diary of a Young Naturalist (Little Toller Books) describes a year in Dara’s life, as his family move across Northern Ireland to a new house and he finds solace in the beauty of nature. Our favourite descriptions in the book are:
● Tadpoles: squiggling, squirming teardrops ● Caterpillars: move like slow-motion accordions ● Streamlined northern gannet: beautiful birds with stunning eyes, Art Deco lines and a six-foot wingspan
My diagnosis
“I was sectioned for nearly three years” This article includes information on self-harm and suicide attempts that you may find distressing
Jackie Russ on being diagnosed aged 56, and all that came before
My whole life has been a bit of a puzzle. I struggled to mix at school. I passed exams easily because I could learn facts off by heart, but with no understanding behind them. I couldn’t follow instructions or directions. I’d get through by copying other people. But I only had a couple of friends and I’d panic if they weren’t around. I managed to find employment and did appear to cope quite well in certain jobs, especially if I worked alone and organised everything my way. My parents had a lot of difficulties with me as I was always seen as anti-social, rude, selfish and angry. I had plenty of anger issues. I did not like being hugged and pushed people away. In 2007, I was diagnosed with emotionally unstable borderline personality disorder (EUPD) and underwent therapy. But nothing helped. Any traumas that came along... stuck. I couldn’t process anything. In 2009, my dad died. Even though I was expecting it, it was a traumatic death and I couldn’t
Need help?
12 Your Autism
If you or your child is feeling suicidal or self-harming, call Samaritans free on 116 123 123 or email jo@samaritans.org – they’re always open and are there to listen. If you or the person you care for is suicidal and needs immediate help, go to the Accident and Emergency (A&E) department of any hospital. Read more at www.autism.org.uk/mental-health
cope. My ‘disordered eating’ worsened. I couldn’t go back home and went completely off the rails. The diagnosis of EUPD just didn’t fit. I started seriously harming myself, taking more and more overdoses, attempting to jump off bridges, sleeping out in the woods, and taking drugs. I was crying out for someone to listen to me, and no-one was. I was so angry and triggered by everything. I think my dad’s illness had given me a focus and stopped me thinking. When he died, I felt exposed and vulnerable. He and I had silently understood each other’s unique ways. I would be in and out of police cells, A&E and mental health wards. I was sectioned for nearly three years, but still no-one knew what was wrong. The police knew something was being missed by the mental health services, and I knew it, too. A few specialists suggested I might be autistic. And then a psychiatrist who specialised in autism in children thought I was autistic, so mum and I decided to find out. The NHS list was too long, so we went private. And yes, I am autistic with sensory processing disorder. I was 56 when I was diagnosed. Suddenly, my whole life made sense. There were reasons and explanations. We also recognised that my father and his brother showed autistic traits, too. Now I am learning to accept what I can and can’t do. I use ear defenders, carry fidget toys, wear sunglasses and a badge to ask for patience. I paint, I create, I illustrate books and have written Move house with Auti and a dog, which I’m hoping will be published. And I’ve nearly trained my spaniel to be my assistance dog. I live alone and cope ‘my’ way.
Real life
Our toy stories With the festive season coming up, we spoke to two members about how their autistic sons play, and their favourite toys
Remziye’s son, Azzy, is five
Azzy is non-verbal, which means he cannot express his needs and emotions as easily as other children. He has his own ways of communicating; we are working on PECS, objects of reference and gestures, with speech and language therapy. Azzy is a sensory seeker, he has a lot of energy and needs sensory input to keep him calm and focused in the day. Despite the difficulties Azzy faces with autism, he is an incredibly loving, happy and very kind little boy who forms amazing bonds with the people he loves and cares about, including his twin brother who is not autistic, staff at his school and family members. There is often a myth that autistic children do not know or show empathy or affection. If ever there was someone to bust that myth, it would be Azzy! It was always interesting to see how differently Azzy and his twin brother played with toys. Azzy’s twin loved imaginative play from a young age and was able to concentrate on his toys without much prompting, whereas Azzy still needs a lot of encouragement, prompting and sometimes hand-over-hand support. Azzy isn’t interested in pretend play, so wouldn’t play with his brother’s construction site vehicles or Lego sets. He is more interested in toys that move, play music, sensory toys and messy play. Interestingly, Azzy doesn’t line toys up or stack them, he is more interested in the sound they make, how they move, their texture and the cause and effect of his handling of the toys. He loves hand painting, water and sand-based toys for this reason. 14 Your Autism
Remziye and Azzy reading and playing
Azzy loves his Buzz Lightyear figure from Toy Story, which speaks phrases at the press of a button. He enjoys his red phonics bus that plays music and sounds out letters and numbers; he also really enjoys playing with beads and blocks, sorting them and shaking them in containers to hear how they sound. His wooden marble run and spinner are
Be guided by your child’s interests and what motivates them favourites, he plays with these every day, and is engrossed in watching the movements. Any toys that have lights or play music are a hit, hence why his iPad is so useful, as the videos and games keep his attention when learning. Azzy is noticeably calmer and more focused when in messy play, like hand painting, crazy foam soap and kinetic sand. Aside from that, he has a lot of energy and prefers to be
Real life
Nicola’s sons Josh and Max are 16 and 20, respectively
Azzy’s top toys: Spinner Wooden marble run Water/messy play table
outdoors. He has a big, colourful collection of garden toys, including a mini wagon he loves to pull around, a water table, and gardening tools, which he uses to dig the garden for his messy play with mud. If he isn’t using them, he is on his swing or trampoline. He needs to let off steam and gets this important sensory input from swinging or jumping most days. His ‘Buckle Buddy’ toy, which is a soft toy with lots of buckles that need to be fastened, helped his fine motor skills and built strength with his grip. We also have a ‘Teeter Popper’ toy at home that helped with balance and gross motor skills. Be guided by your child’s interests and what motivates them. Don’t be restricted in buying toys you think are age appropriate, just focus on what your child enjoys. Sometimes keeping it simple works; for instance, Azzy enjoys playing with balloons!
I can’t even begin to tell you how many toys I bought to try to engage Max and Josh. I purchased so many over the years, always hoping it would be the thing that would float their boat. When they did like a toy, their play was so unusual. Max would fixate on cause and effect toys, pressing one button over and over again. Sometimes it was as though he didn’t know how to interact with a toy, he couldn’t pretend to drive a car across the floor or make a cup of tea with a tea set. Josh would line up cars and trains. Again, he couldn’t engage in imaginative play, it was as if he didn’t see the point. Christmas was like Santa’s grotto, with every toy known to mankind that might stimulate interaction purchased and put under the Christmas tree. Cause and effect toys were big on the list because they seemed to help grab their attention. One year, we bought a ride-on Thomas the Tank Engine toy for Josh, a sit-on train that played the theme tune as you rode around a track that took over the living room. On Christmas Eve, Max came racing down the stairs, jumped on it and started to ride around the room at 1am! We used to find that they would fixate on images of
Josh and Max with their sister Molly Winter 2020 15
Real life
Expert advice Laura Davies from our EarlyBird team recommends the ‘backwards chaining’ technique to teach your child how to play with a toy or puzzle. She explains: “Break new skills into small, easy, achievable steps. Initially, you may need to complete most of the task, with your child just completing the final step and then receiving lots of praise from you. A good example is getting your child to put the final piece in a puzzle. Gradually reduce how much of the task you complete and increase the amount your child completes. Eventually, your child can learn how to complete the activity independently.” Read more about our EarlyBird courses for parents at www.autism.org.uk/ earlybird
Max and Josh’s top toys: Thomas the Tank Engine ride-on toy and jigsaw Construction toys Rubber men toys with smiley faces
Max, aged three, playing his toy piano
Thomas; a lot of autistic children have an affinity with Thomas. Perhaps it’s the eyes and how they move? Josh has always liked puzzles and is really good at them. During lockdown he has completed quite a few. We have ordered a 300-piece puzzle of Thomas for him, and I can guarantee he will do that entire puzzle. We have really tried to find that one thing that interests him so much that it can become a strength, and something we can build on. Josh can’t speak, but he can operate a tablet and mobile phone. He also likes construction toys and we’ve introduced him to different types, trying to encourage him to make and build things. Max is obsessed with little miniature rubber men toys that have smiley faces. I find that interesting. Being autistic, it’s difficult for him to read emotion. However, I don’t think that’s the attraction for Max. He tends to tap his 16 Your Autism
forehead with the toy as a means of selfregulating when in a situation where he has to process. It takes him a while to process information and I believe he taps his head as a means to helping him make sense of the situation and do what is expected of him at that moment, like completing an activity. Toys like musical instruments were also good. The speech therapists used to say that blowing a musical instrument was an important skill that would aid speech. Read more on Nicola’s blog at: https://autismwartsandall.wordpress.com
Read our members’ tips on opening Christmas presents on pages 26-28.
Employment
Employing autism
Dame Stephanie Shirley CH talks about finding the right job to suit your skills Many of the thousands of working age autistic people in Britain want to get into work. But the rate of employment is much less than that of the disabled population who are not autistic – 80% of non-disabled people are in work, compared with 47% of disabled people, and only 32% of autistic people, according to the National Autistic Society’s 2016 report, The autism employment gap. This is for a group whose main impairment is in social interaction. The waste of talent has been accentuated by the coronavirus crisis. Many autistic people who are in paid work do not have jobs that match their intellect. Despite graduate-level skills, they often fail to get or keep jobs – even ones (typically in retail, care or administration) that do not represent their formal qualifications. I define work as disciplined physical or intellectual 18 Your Autism
Work special
activity towards some goal. It is not just paid work. Voluntary roles demonstrate all the things potential employers look for, or it can be satisfying creative activities. Work is not just something you do when you’d rather be doing something else. Picasso called work “the ultimate seduction” (as I grow older, this makes more sense) and Thomas Carlyle thought it “the grand cure of all the maladies”. More than 60% of autistic adults are financially dependent on their families. The London School of Economics* estimates the loss of income averages more than £20,000 a year for the individual, and 14% of income for parents’ reduced earnings.
A minor adjustment can make a major difference
Employment
Nationally, this equates to a staggering £10bn annually.
and the specific talents – often unrecognised – that come with their differences, an applicant could ask for questions to be disclosed before any recruitment interview takes place. Better still would be to secure a trial, where practical abilities can be demonstrated.
Opportunities for work
In the workplace
In the workplace itself, once colleagues understand autism, they are often very helpful. Autistic people can sometimes find being in large groups very stressful, so it’s best to look for a small, stable group or one-to-one working. Make sure you get a designated workspace, not a hot desk. Ask for an appropriate sensory adjustment to maintain low stress levels. Autism can make any or all of the five senses very weak or very strong. Most of us don’t notice the buzzing of light tubes. Some people on the autism spectrum hear it so loud as to exclude anything else, so special lighting or tinted lenses might be needed to filter out the frequencies causing the problem. And perhaps also headphones to block out noises that don’t worry me, but are excruciating for some autistic people. It’s worth negotiating these things before employment begins. A minor
Philip Sinden
In 2018, the National Autistic Society presented me with one of its coveted Autism Professional Awards. This honour was for autism work, including a three-year study that led to Autism works, a book full of case histories. It showed wonderful examples of opportunities, ranging from social enterprises where pre-verbal adults with autism earn the living wage, to an academic Centre for Applied Autism Research in partnership with a financial services firm. Other establishments concentrate on helping autistic people with the difficult transition into work. My first charity set up the first autism-specific Kingwood College in Reading, Berkshire, in 2012. It’s small, but effective in teaching life skills. Although many autistic people are successful at work, others have difficulty and some may remain unemployed. Workplace structure may suit some and hamper others. But it is not the lack of skills, enthusiasm or motivation to deploy their lives usefully that are the barriers to work, but rather the problem with communication, interpretation of language and the ability to access services. Many remain extremely vulnerable, finding it hard to get into employment and to make friends. Many of us enjoy the social aspects of work, but it is precisely those social aspects that present the greatest challenge for autistic people who may choose to remain alone or at their workstation rather than socialising with colleagues over lunch. And the higher up the employment scale, the more social one is generally expected to be. It’s worth reminding doubters that autism’s different cognitive style can confer advantages in certain contexts. A recent study from the University of Stirling** showed a welcome link between autistic traits and unusual and original ideas. To concentrate on what autistic people can do, their strengths rather than their deficits,
Dame Stephanie Shirley CH – known as Steve – is a successful IT entrepreneur turned philanthropist. In 1962, she founded an all-woman software company that pioneered remote working, upending the expectations of the time. Since retiring, her focus has been on philanthropy, especially autism and IT. Her TED Talk has had more than two million views, and her memoir, Let it go, is being made into a film. Dame Stephanie is a longstanding member of our charity. Her late son, Giles, was autistic, and this led her to found Autism at Kingwood, Prior’s Court School and Autistica. www.steveshirley.com
Winter 2020 19
Employment
adjustment can make a major difference. The aim of adjustment is to minimise anxiety and to stop worrying – worrying about being late, worrying what to do at lunchtime, worrying about what people are asking of you. Such issues can be resolved when a selected workplace has consistency. It is also worth looking for a mentor. Note that there are some IT companies that employ exclusively autistic people as IT consultants, data coders and data quality checkers. Their employees relate better to the consistency of computers than to unpredictable human beings. So, IT enables them to work better and faster, as it can do for us all.
Playing to your strengths
Applicants should also look for tasks that play to their strengths. For some autistic people, this is in systemising, precision and thoroughness. Many autistic people have an extraordinary capacity to hold information ‘online’ when solving a problem. They have a wonderful ability to hyperfocus. Enquiry jobs, indeed all those staring-ata-screen type jobs, can be good. As most organisations are into technology nowadays, that gives lots of professional opportunities. As we all know, the homeworking revolution brought about by coronavirus means that many of us will be working and meeting on screen perhaps permanently. Society needs to see with new eyes and modify its ways of
Top jobs The top five professions autistic people would like to work in are: The arts/acting (11%) IT (10%) Admin/office work (9%) Scientific research (7%) Library/museum work (7%) Source: The autism employment gap report (2016)
working, rather than expecting everyone to adapt to standard work environments. Autistic people function well at work if the focus is on their ability and skills, rather than any associated disability or awkwardness. Not everything that’s different is inferior. New ideas can be amazing, and it’d be boring if we all thought in the same way all the time. Autistic people see reality from a different perspective and can have a positive impact in both public and private organisations. The autism employment gap costs the nation highly. But it is easy to compensate for. As I said, “a minor adjustment can make a major difference”. So, give it a go. Apply for that job, go where you are celebrated. You’ll find that work is well worthwhile. * Iemmi, V., Knapp, M., Ragan, I., (2017). The autism dividend: reaping the rewards of better investment. LSE: London ** https://www.stir.ac.uk/news/2015/08/researchdiscovers-link-between-autism-and-creativity/
Natasha Alipour-Faridani
Do you want to be part of changing the employment landscape for autistic people? Our first Work Summit will be held on 4 March 2021. Find out more at www.autism.org. uk/work-summit
20 Your Autism
Employment
Work special
Creating opportunities
We have launched a new Autism at Work programme to promote job opportunities to autistic people Only 16% of autistic adults are in full-time employment, though 77% want to work. Autistic people are often disadvantaged when it comes to getting and keeping a job because of difficulties with social communication and interaction, and other people’s lack of understanding. As well as helping employers to become more autism-friendly, we want to create more opportunities for autistic people to find work. Our charity’s new Autism at Work programme, in partnership with the Bloomfield Trust, supports
employers to promote job opportunities to autistic jobseekers. Support for candidates includes pre-employment preparation, support when starting the role, and ongoing meetings with a specialist job coach. Current opportunities include roles from Auto Trader UK, JP Morgan and Oracle, and range from full-time technical roles to summer internship programmes. You can see the full range of roles at www.autism.org.uk/what-we-do/employment/ job-opportunities
Jerrel’s story What were you doing before the Autism at Work programme? I was out of work for about seven months. I was applying for jobs, but did not receive any responses. How did you get involved with the programme? I found out about it at the end of my civil service internship with the Home Office. I met Mandeep, who works at HMRC, at the closing ceremony. She told me about the programme and how I could potentially join the Secure Our Technical Future (SOTF) team at HMRC through it. Seven months later, I am now working with Mandeep and many other staff as a data business analyst.
What skills do you work on with your job coach? I’m working on my social skills. I’m doing my best to keep in touch with my colleagues during these difficult times, and am trying to meet new colleagues by joining more meetings and virtual groupings. I feel I can achieve this if I just come out of my comfort zone a little bit more. What skills have you developed? My confidence has improved a lot. I am working with people who respect me and are willing to do what they can to ensure I feel comfortable around them, despite my social challenges. Because I feel more confident, my communication skills have improved. Winter 2020 21
© Paul McKenzie Photography
Health
Autism and pregnancy Pregnancy is usually a wonderful time, but the changes it brings can also cause anxiety and stress for autistic mums-to-be, as Tracey Lattimore finds out Pregnancy is an exciting time for most women – watching your body change and knowing that you’re growing a new life can be an amazing experience. However, along with the joy comes a raft of other emotions, which can be heightened for autistic people. “I hated being pregnant,” says autistic mum Rachel Townson, Online Training and Development Manager for our charity, who has a two-year-old daughter, Bonnie. “I was so happy to finally have conceived, but it was 22 Your Autism
overshadowed with anxiety over miscarriage risk and intense sickness, so I couldn’t enjoy the experience. “Once I was into the second half of my second trimester, things started to calm down and I became overly aware of the baby’s movement. I was told early on that I couldn’t feel some of the things I said I could, that it was too early, but now – after speaking to many other autistic mothers – I recognise that this is a difference we enjoy. Some of us get to feel those movements, those kicks and sensations, earlier than the textbooks advise.” The changes that pregnancy brings are different for all women, but they can be especially difficult, it seems, for autistic mums-to-be. For instance, being in close contact with midwives and health visitors can be hard to deal with. Lana Grant, author of From here to maternity, and mum of six, found this to be true. “Examinations were really tough,” she explains. “With my senses heightened, it was difficult being in a hospital environment. This – coupled with the levels of anxiety of not knowing what was going to happen – was quite hard.” Rachel found that she rarely saw the same midwife or care practitioner twice, and that when she told them she was autistic and might struggle with indirect language, she felt she was ignored. “At times, I became emotional at appointments. But, as the person was always a stranger to me, and it was likely they hadn’t read my notes, they often just rolled their eyes, or gave me a tissue while turning back to their computer screen. I didn’t feel listened to or supported, and I felt extremely isolated.”
Giving birth
Giving birth in a hospital also has its challenges for autistic women. The bright lights and often noisy, busy wards – especially at night – can be extremely stressful, while personal examinations are difficult for those who are very touch-sensitive. Lana explains: “The bright lights and noise were very hard to deal with. And the fact that I was in a ward with other people was also something that I
Health
found incredibly difficult. I had to have a caesarean with my sixth child as I had gestational diabetes and, when I returned to the postnatal ward – where I had a room of my own – the staff informed me that I needed to be moved to a four-bed ward. This led me to have a meltdown, and resulted in me trying to self-discharge. My mother advocated for me and explained the sensory and communication difficulties I would face if I was moved. Eventually, the staff found me another room.” While giving birth rarely goes to plan, Rachel found that – even though she had prepared – there were still some things that came as a shock. Her birth plan changed dramatically, as she knew it might, but she hadn’t expected labour to be so different to the description in the textbooks. “What I hadn’t considered was not experiencing contractions,” she explains. “I had severe back pain and could barely walk, but I did not get the sensations that I was told to look out for. After making numerous calls to the pregnancy unit and being told to stay at home, my husband decided enough was enough, and took me in. “I masked uncontrollably the whole time,” she says. “I hobbled to the desk, squeaked out my name and was told to sit and wait. But I couldn’t sit. I was then taken into an examination room, where the midwife examined me and ran out the room. A doctor brought in a portable scanner and realised that baby and I were both in danger. I was 8cm dilated, and my baby was breech – and stuck. I was rushed into theatre for an emergency C-section, and my baby was born – within an hour of having arrived at hospital.” Rachel’s advice is to connect with other autistic mothers – those who are currently pregnant and those who have experienced birth. Your experience may differ from what your midwife tells you and what the textbooks say, so don’t dismiss your symptoms. “If you are in pain or concerned, go to the hospital,” says Rachel. “While both baby and I were fine, it could have been fatal for one or both of us.” It’s not just pregnancy that can be difficult.
My Health Passport ‘My Health Passport’ is our charity’s resource for autistic people who might need hospital treatment, and is endorsed by the Department of Health and Social Care. The passport is designed to help autistic people to communicate their needs to doctors, nurses and other healthcare professionals. You can download it at www.autism. org.uk/my-health-passport Once completed, make sure you take it with you when you go to hospital and show it to any healthcare professionals you deal with, and make sure it is kept with your notes if you have to stay in overnight.
Rachel with baby Bonnie
Winter 2020 23
Health
Lana’s top tips for new mums •F ind a support circle either locally or online for mums and mums-to-be. There is a lot of evidence that online support can work well for autistic people. • Cherry-pick the groups you really want to attend with your baby, or when pregnant, and make contact with whoever leads the group. Explain your situation to them before attending. • Make health professionals aware of your diagnosis, if you are comfortable with this. My health visitor made sure I was well supported after baby number six. I had extra visits and was encouraged to attend a new mum’s group. She telephoned me the day before the group and arranged to meet me in the reception area, so that I didn’t have to face it alone.
Most new mums find becoming a parent overwhelming, especially during the first few days and weeks. Rachel’s health visitor made the experience especially easy for her, thanks to a deep level of understanding. “She was wonderful,” says Rachel. “She asked me straight away if there was anything specific that I felt she should know, to help her to support me with my journey into motherhood. “I was stressed about the developmental assessments health visitors carry out, so she would prepare me with what would be done, and what both outcomes would look like. On occasion, she would ask me about autism in a wider sense. She was a dream come true.” Changes still need to be made to the healthcare system to allow for the needs of autistic people. Rachel believes that information needs to be broken down into the person’s preferred learning style, with health professionals adjusting their communication to the person’s needs, and ensuring information is understood and delivered in a literal way. But the changes don’t need to be massive, according to Lana – small steps pave the way for bigger changes. “It’s important for autistic 24 Your Autism
women to have one point of contact within the midwifery team who understands how their autism affects their life and, in turn, their pregnancy and birth,” she says. “I’d really like to see autism champions in hospital settings, particularly in midwifery care. There is no ‘one size that fits all’, but a dialogue around what works for that person is incredibly important.” The training of midwives and other healthcare professionals in autism and pregnancy would go a long way to making the experience of pregnancy and birth for autistic women as enjoyable as it should be. As reported in our autumn issue, our charity is helping to develop mandatory training in learning disability and autism for health and social care staff in England. We’re pushing for Scotland, Wales and Northern Ireland to put in similar training. This training will help midwives, doctors, nurses and healthcare assistants to understand more about autism.
Readers to the rescue Christmas special
Post your problems or answers on Facebook at National Autistic Society or email YourAutismMag@nas.org.uk
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Q
My son, four, is autistic and has limited speech. Christmas is hard as he won’t open presents and doesn’t understand the day. I see his cousins hanging up stockings and feel sad that my son doesn’t have the same magical feelings. How do others make Christmas special for their child? Anonymous, via our online community
A
First of all, you are definitely not alone. Christmas is such a weird time, and it can feel tough if you can’t engage in it in the way you feel you are expected to. Our daughter Lucy is 12 and has a severe learning disability and autism. For many years, she struggled with Christmas, and I struggled with her struggle. It’s such an intense time, and the changes to routine are everywhere – school, home, community, and so on. We found visual planners helped our daughter feel safe as they helped her prepare for some of the chaos of the world at this really busy time of year. We also tried to keep certain routines the same, to create a feeling of security, such as keeping meal times and bedtimes consistent, and you are probably doing this already. I have learned to take it at her pace. When she was your son’s age, she didn’t like opening presents as I think she felt the pressure of the focus being on her, and perhaps an expectation to respond in a certain 26 Your Autism
Lucy and Debbie
way. We spread it out and she opened one present a day, often with a chocolate as a reward, as I felt under pressure to thank people. A few years on, and she loves opening presents, though she doesn’t always react to the gift unless it is chocolate or a favourite DVD. Over the years, we have found there are things about Christmas that she really loves; most of them are in the build-up and are not about the day. She loves the Christmas lights, so we go and see as many displays as we can. She adores singing and music, so I find as many Christmas carol concerts as I can and we go to them all. We sing Christmas carols all year and, in September, when she wants me to sing a carol, people remark “Christmas already?” I reply “Still!” Finally, a word on presents: I ask family for money, and that helps buy things that she likes, that are often expensive. This year, on her birthday, I prepared her for her presents by talking about them so they weren’t unexpected and, in my mind, that might give her a sense of getting what she wanted. It’s hard for us to give up on what we emotionally feel Christmas and birthdays should be and feel like, but when we do, we find a new magic. Debbie Austin, mummy to Lucy Debbie wins a copy of The ice-cream sundae guide to autism, an interactive kids’ book for understanding autism by Debby Elley and Tori Houghton.
Advice
A
This pulled at my heartstrings as I, too, have been there. Please remember that your child is different and enjoys different things. Make the day special with things they like. If they love chicken nuggets for dinner, then ditch the turkey. If they don’t want to unwrap lots of presents, then just give them a gift every hour unwrapped. I can tell you my autistic daughter Kayleigh is 13, and now looks forward to Christmas – and has done for a few years now. It will come! Just with everything else, it will take time. Amanda D’Amico
A
I once asked a doctor who had worked with the late Lorna Wing a similar question. He explained that my autistic son didn’t see things from my perspective, and that he wouldn’t want to change his feelings to those of mine. This made me look at things from a different angle. I realised that all the years I had felt sad for him missing out on the magical feelings was more about my feelings. The loss I felt for him isn’t the loss he feels. Christmas is often a stressful time because of the changes involved in the preparations. Many autistic people find it difficult to cope at these times. Liz Foster
A
My son always struggled with Christmas. I found he experienced sensory overload with busy patterns on wrapping paper. I cut down the amount we used, so I put gifts in his stocking that are wrapped with plain coloured tissue
Nicola’s son Josh
Amanda’s daughter Kayleigh
A
We have the same issues with our daughter, who is six. It is all about adjusting expectations and doing things that do make your son happy. Our daughter had been eyeing up scooters at her pre-school. Rather than wrap it up and try to get her to open it, we just presented her with it. She absolutely loved it and made us push her around on it all day. I’ve never seen her For expert laugh so much. As long as advice on any your son has enjoyed the autism-related day and is happy, that is issue, call our the main thing. Tom Riley Autism Helpline on 0808 800 4104
paper and some unwrapped. They are things I know he likes – biscuits, small toys, a lollipop, new headphones for his iPad – just things he likes to use. We put his stocking in his room, and we sit with him quietly and get him to unpack it. On Christmas Day, we take our time and don’t rush. We eat later in the day and try to keep to a routine that’s similar to a normal day so that he doesn’t get overwhelmed. One by one, we get him to open a gift and give him time to process. It’s normal to feel sad, but try not to. His needs and wishes will be different from ours. What will make him happy is just keeping things calm. It took a while for my son, but he now joins us for Christmas dinner where I just provide things he likes to eat. Even if gift opening spills into Boxing Day, it’s fine. Put less pressure on yourself, too, and you will get there. Nicola Parker Winter 2020 27
Advice
A
My guidance is to remember that ‘change’ can distress an autistic person. The festivities and presents at Christmas – and other key events such as birthdays – can be too much of a change, too quickly and they just cannot cope with it. Our son used to, and to a degree still does, respond the same way as your son. We found that to introduce Christmas gradually over a period of time, explaining what will happen, when and in what order, helps. Also, for them to ‘sample’ elements of Christmas way ahead of time, go and see decorations and trees – garden centres are brilliant for this – and talk about what you will be ‘decking the halls’ with. When it comes to presents, be prescriptive to family and friends about what your son would like so that you know ahead of time. It would help also if you allowed your son to see the presents and join you in the wrapping process. Let him put them under the tree with you, or wherever you put them, so he knows and can process the fact that this item – that he understands and knows not to be afraid of, because of his earlier exposure to it – is wrapped up and he knows exactly where it is. The key is to prevent the ‘surprise’ when Christmas Day comes. If you spend time ahead of the day this way, I’m sure you will manage the day much better and it
Help me next!
Paul with his son Marc
will give you scope to address other sudden surprises that may, and usually do, come along. It is so distressing when you are hoping for an excited response to a hidden gift, but try to put yourself in the place of your son, who is given this box and he doesn’t know what it is. His autism prevents him from processing the gift as just that and it becomes a threat he cannot understand. Your joy will come from the fact that he will open the gift
I’m a university student, living in halls of residence. There are fire alarms in each room, and whenever I’m in my room I fear my alarm will go off. I’m not scared of the loud noise, but of the sudden unexpected jump when it comes, and it creates this uncomfortable feeling. Does anyone have any tips? Anonymous, via our online community 28 Your Autism
and accept it as an old friend as he recognises the gift he helped to wrap some weeks earlier. To see his face light up and smile this way will surely bring you all the magic of Christmas. We have been doing Christmas this way with our son each year and it has been a great success. He is now 33, and we follow the process strictly each year. Paul Fraser
Send us your solutions for a chance to win a copy of Our autistic lives: personal accounts from autistic adults around the world aged 20 to 70+, edited by Alex Ratcliffe.
By writing to us with either a problem or an answer, you give consent for your letter to be published. We reserve the right to edit submissions.
Advice
How to… use public transport Martin Godwin/GNM
We look into travel training and other ways to learn about using public transport
Travel training helped Rene
Learning to travel on public transport by yourself is an invaluable life skill. But loud tannoy announcements and unexpected delays are challenges if you are on the autism spectrum. Many local authorities now offer free travel training. Eligibility varies, but you often need to have an education, health and care plan or be receiving free home-to-
10 tips for bus travel Autistic adult Fiona Jones shares her ideas 1. If possible, avoid the busiest times. 2. Use headphones to block out the noise on the bus. 3. Use a paper timetable or phone app to tell you the bus arrival and departure times. 4. If the bus hasn’t appeared, try not to panic. Check indicator boards to see if they offer any ideas about why it is late or has not arrived. 5. Carry your ‘I am autistic’ or a journey assistance card to let transport operators know you need support when using public transport. You can also show these if you can’t wear a face covering and someone asks you about it. 6. Stick to routes you know and feel comfortable with at first, and then gradually build up
30 Your Autism
confidence to travel on new routes over time. 7. H ave a back-up plan: examples could be a taxi, or a support worker, family member or close friend who could pick you up. 8. C arry your mobile and keep in contact with your support worker or family member at all times. 9. Make sure you carry your bus pass if you are entitled to free bus travel, but take money in case you lose your card. 10. Try to sit near a bell and be sure to watch out for your stop. Or, if easier, look out for landmarks to focus on.
Advice
Campaigning on face coverings Across the UK, the rules are that you have to wear a face covering on public transport unless you have a good reason not to. The Government has given some examples of when you don’t have to wear a face covering: ● If you can’t put on, wear or remove a face covering because of a physical or mental illness or impairment, or disability ● If putting on, wearing or removing a face covering will cause you severe distress.
This means that, if you or someone you support is autistic, and finds putting a face covering on hard or distressing, you don’t have to wear one.
school transport, post-16 transport or social care transport. For instance, Essex County Council’s training covers confidence in using buses or trains, personal safety, how to buy tickets, and what to do when things go wrong (such as the bus being late). A trainer will go with the trainee on their journey to school, college or a day centre, giving encouragement and guidance until they develop skills to travel on their own. Rene, who is autistic, completed his travel training in Lambeth last year with social enterprise HCT Group – and is now out and about independently. He was assessed and then assigned a travel trainer, who worked with him on issues such as road safety, adverse weather and stranger awareness, while they travelled together along the route from his family home to college, a one-hour journey. Over six weeks, the trainer gradually disengaged until Rene was making the whole journey alone. Rene said: “Before travel training, I went to school in a taxi so I couldn’t do clubs after school. Now I’m more independent – I can go out where and when I want to. I feel really positive. If I hadn’t done travel
We have told the Government that transport staff and the public need to know about these exemptions. We have produced an information sheet at www. autism.org.uk/face-masks that you can share with transport staff if you are asked why you are not wearing a face covering. You can also download our ‘I am Autistic’ card here. Meanwhile, if you can wear a face covering, read our tips from autistic people at www.autism. org.uk/face-coverings.
training, I couldn’t go to the clubs after college, or to any other places. I would be at home.” Rene’s mother has also seen the impact: “I was worried he would be out travelling and get hurt. So, I kept him close for protection. When I met the travel trainers, I felt very reassured, they kept me up to date with his progress. I would recommend it. Rene is so confident and he can do so many different things. It’s been very good for him.” Some parents have shown their children what to do. Our member Teal Hope says: “I use buses three days a week to travel to college. At first, I was really nervous about going on the bus by myself, so my dad showed me what to do with my saltire card [Scotland’s prepaid smartcard]. Now I can go by myself as I know where to get off and the route of the journey.”
To access travel training near you, visit your local authority’s website.
Winter 2020 31
Advice
Adult diagnosis How do you get diagnosed as an adult and what does an adult autism assessment involve? Our Helpline Adviser, Rob, explains It’s not at all uncommon for adults to have gone through much of their life before choosing to seek an assessment. Perhaps you’ve always felt slightly different in social settings, or maybe you’ve seen, read or heard something that sparks an interest in an autism assessment. It is up to you whether you choose to seek a diagnosis. Many are fine to live without a formal diagnosis and learn more about autism and what can help without going through an assessment. Often, people develop coping mechanisms that allow them to manage comfortably without the need for diagnostic terms or specialised support. However, there are others who feel that 32 Your Autism
access to a formal diagnosis, including possible support services and reasonable adjustments made by employers or universities, might be beneficial. Some people feel these may be life-changing.
Seeking the assessment
If you decide to seek an assessment, in most areas you will need a referral from your GP. Keeping the appointment focused on seeking an assessment can be important, as can focusing on the specifics of why you feel a diagnosis would benefit you. In some instances, the GP may not understand why you are now seeking a diagnosis. Be clear about the struggles you face, how they relate to the generally recognised characteristics of those on the autism spectrum (difficulties around social interaction and communication, repetitive or restrictive behaviour and routines, sensory difficulties)
Advice
and why you would like to further explore this (support, self-understanding). If you are seeing another health professional, such as a psychologist, it may be possible to ask for a referral from them. If nobody will make a referral for you, ask why. The more information you have about decisions being made about you, the more control you can have over the possible pathways available. Keep in mind, if facing barriers, you can always seek a referral from an alternative GP or raise a complaint. If a referral is made, you are likely to be referred to a diagnostic service in your local area. Sometimes people have somewhere specific in mind they would prefer to have their assessment. You can express a preference to those making the referral. Seeking assessment can be a daunting experience and feeling confident that you have a say in who you see and speak to can be important. If the service is in another town, you can still make the request. As out-of-area requests often require further funding, you will need to have a solid case why you feel that service is the most suitable for you. Private diagnosis is an option for those able to afford it, but you may occasionally find that local service providers – for example, social services – will not accept private diagnoses when assessing your eligibility for care and support services. If you are not sure whether a private diagnosis will be accepted where you live, you can contact local services directly (such as adult social services) and ask about their criteria.
The assessment
It can be quite overwhelming to imagine what an autism assessment might be like. Keep in mind that, although it is a clinical assessment, it is not a medical examination. You will not require a physical examination, apart from, in some instances, for ruling out certain sensory differences on medical grounds, such as hearing or sight, for example. Different clinicians will have different approaches and diagnostic
methods when it comes to gathering information about you during the assessment. Ultimately however, the assessment is precisely that – an information–gathering exercise. The assessment will focus on any persistent difficulties with social communication and interaction, as well as restricted and repetitive patterns of behaviours, activities or interests, including any sensory differences. How these characteristics affect your everyday life and their impact on you since childhood will be taken into consideration. Characteristics such as these will appear differently in different people. No two autistic people are entirely alike, and your particular characteristics are your own. Consider how your behaviour aligns with those characteristics of autism mentioned above, so you feel confident that you are fully and honestly represented during the assessment. You may be asked to bring along a friend or family member who is able to talk about your development and characteristics. Whichever assessment approach is taken, it is likely to involve questions about your developmental history during childhood. The particular ways in which you picked up language and engaged socially may be focused on. If no developmental history is available, or you do not have a friend or family member able to assist with this, it may not allow for a formal diagnosis using the standard ICD or DSM classification systems. These are the diagnostic manuals used for official diagnosis. However, there are various assessment methods, and diagnosticians will have different approaches as to what information is important and how they assess it. If a formal diagnosis under the standard diagnostic manuals is not possible, this does not mean that an experienced clinician cannot use their clinical judgement to help produce a practical, working diagnosis and profile that you can still use for care and support purposes. A psychiatrist with autism training and experience will likely assess you, as they hold the authority to diagnose. A clinical Winter 2020 33
Advice
psychologist may also be involved in helping to develop a profile. In some instances, other professionals such as an occupational therapist might also be involved. A profile can be important in establishing any difficulties and differences, as well as any possible support goals. Depending on the approach taken and the professionals involved, the assessment may be focused on strict diagnosis or on a more rounded consideration of individual characteristics and how the diagnostic term can be useful to categorise and assist. Being clear as to what you will receive from the assessment and whether a detailed profile will be produced with any given diagnosis can be worthwhile.
After the assessment
The clinical service will tell you whether you have received the diagnosis. You might be told this on the assessment day, or after. You can ask the clinicians when to expect the results and how the information will be provided. If there are elements of the report that you don’t understand, you can ask to have them explained. You can also ask what will happen with the report; can it be forwarded to your GP, for example?
Ask if there is any follow-up support given by the clinical service, such as practical guidance, links to local services or direct access to support through the clinical service. There is often no automatic support given post-diagnosis, so being sure about what will be provided and what you will have to seek yourself can be important. If you don’t agree with the results, you can seek a second opinion. Raising your concerns directly with the diagnosticians, so you feel clear why they reached this conclusion, and asking your GP to refer you for a second opinion, would be the next step. Making sure you are assessed by a different clinician can be important, however be aware that their opinion may match the first assessor. Seeking an autism assessment as an adult is a personal journey. Be it services, support or self-understanding, a formal diagnosis can be beneficial in many ways. Nonetheless, the process can be long and difficult. Feeling confident about your reasons for seeking assessment and asking questions of professionals throughout can help to make it a smooth, positive and beneficial process. ● Visit www.autism.org.uk/diagnosis
Elaine’s story I wanted to be assessed, as I was concerned about losing a job I loved by being perceived as difficult. I had always felt different. I asked my employer’s staff counselling service to refer me for an assessment. I prepared by reading books and websites, writing notes and compiling thoughts; 18 months later, I had written more than 150,000 words (split into chapters). I had to be prepared. The pre-assessment involved
34 Your Autism
questionnaires and taking an extensive medical history. The assessment itself, undertaken by an NHS psychologist, was more than three hours long. Questions were on friendships, student and working life, marriage and children. We discussed routines, the need to plan, drinking to help socialise… so many things came up that I hadn’t thought about much, or realised their significance. It was gruelling and seemed
unstructured, but the assessor was very kind and insightful. Though I was warned at the start that further discussions may be needed, at the end of the assessment the psychologist told me I was autistic. It took around six weeks for the written report to arrive. The wait for assessment was extremely challenging, but it has been immensely worthwhile. I don’t dislike myself anymore – I think maybe I’m OK.
Winter 2020 35
Meet the team
“They’ve been left stranded” We spoke to Shirelle Stewart, our Director in Northern Ireland, about supporting autistic children and adults during lockdown We know autistic children and adults have suffered disproportionately during lockdown. What have autistic people and families in Northern Ireland told you? Many of the families we support have been left to cope on their own. They feel forgotten and abandoned. School, respite and day services all stopped overnight and autistic people with complex needs did not understand why their structure and routine had been pulled from under them. This often led to an increase in very distressed behaviour. Unfortunately, apart from school, many of these services have not been fully reinstated, so autistic people and their families are still in crisis. How was the National Autistic Society NI able to help? We tried very hard to keep the needs of autistic people and their families in the minds of political representatives. We succeeded in getting the First Minister, Arlene Foster, to mention the very
specific needs of autistic people in her coronavirus press briefing. We ensured that exemptions to travelling for exercise for autistic people were applied and that the police service was made aware of them. Many autistic children with complex needs should have had a best interests assessment. If the outcome was that the child’s interests would be best met in school, then a school placement should have been offered. Many children were denied a place, so we advocated on behalf of these families to the Northern Ireland Assembly, Department of Education and the Education Authority. We supported legal action, and in June, a number of young people were offered placements. We received funding from the Northern Ireland Lottery to operate a Northern Irelandspecific advice line, and have also opened the outside area of our autism centre for use by individual families. The family books an hour slot and then the equipment is cleaned and sanitised before the next family uses it. This has been
so well received by the families we support.
What do you enjoy most about your job? I have a very wide remit, which covers our social programmes, policy, campaigns and media. I could be helping at a summer scheme or our juniors club, then presenting to an assembly committee. I relish the variety. I also enjoy my time working directly with autistic people and their families, and this keeps me in touch with issues on the ground. What do you do when you’re not working? I am mum to two boys, one who is 17 and has complex and high support needs, so time is at a premium. During lockdown, I created a nice garden area, of which I am very proud. Prior to lockdown, it resembled one of those before shots you see on gardening makeover programmes. I am Irish, so partial to socialising with or, as we like to say, having craic with friends and a glass or two of vino. Winter 2020 37
Notebook
Everything you need to read, do or see
Loop
OUT ON: Disney+ VERDICT: Pixar’s amazing short film on some people’s struggle for connection Loop is about a 13-year-old girl called Renee who’s autistic and non-verbal. She is paired up with Marcus, her support assistant for the day, on a canoe ride. As they paddle down the river, Marcus – who isn’t familiar with Renee’s condition – struggles to understand what she is trying to say. What I like about Loop is that it shows Renee’s personality and how Marcus, who’s not autistic, tries to understand her emotions by observing what she wants from him. For example, Renee uses her phone to direct Marcus to paddle into the reeds, as she wants to feel them. Erica Milsom, the creator of Loop, has worked with young disabled people. She said: “Over time, we’d find a way to connect, often without words… but it wasn’t immediate, and it took effort on both sides.” This means Erica and the Pixar team were addressing how tricky it is to interact with a young autistic person with little eye contact, unusual behaviour and with some unable to communicate with other people. It shows how we all need to be educated and be patient around others. As a young autistic person, I found Loop charming, colourful and full of surprises. I strongly recommend everyone watches this. One day, we could all meet and know someone autistic who has learning difficulties. Max Ferreira, autistic author
Moojag and the auticode secret
AUTHOR: N E McMorran PUBLISHER: Spondylux Press PRICE: £6.99 VERDICT: Quirky adventure with autistic characters, for readers aged 11 years and up When Nema and her friends discover a hidden sugarhooked society holding lost kids, they find their world in danger. The strange, sticky place hides the truth about Nema’s missing brother, and a plot to destroy the free life she knows. But only they can reverse a code to prevent a rock candy robot invasion and rescue the children. Moojag and the Auticode Secret is a quirky cli-fi (climate-fiction) story written by an autistic author, featuring a pleasingly diverse range of autistic characters. Set in the post-catastrophe ‘Surrey Isles’ in Britain 2054, it’s a weird and wonderful adventure that will appeal to children aged 11 and upwards. If you prefer to listen to stories, there is an audio version, too, voiced/narrated by an all autistic and dyslexic cast, including Ria Lina, Indica Watson, Emily Burke, and Harry Thompson. Suzanne Westbury, Your Autism magazine editor
Giveaway
We have two copies of Moojag and the auticode secret to give away to members. For a chance of winning the book, email your details to YourAutismMag@nas.org.uk by 15 January, quoting ‘Moojag’. The winners will be announced in the next issue. The winners of last issue’s competition are Tamara Wheatley and Stephenie Lione. They each get a copy of A kind of spark by Elle McNicoll.
Winter 2020 39
Notebook
Made possible
AUTHOR: Saba Salman PUBLISHER: Unbound Press PRICE: £9.99 VERDICT: Inspirational stories This is an invaluable new book. Veteran journalist and campaigner Saba Salman (who has a sister with learning disabilities) invited nine people with learning disabilities to tell their own stories. They describe how they overcame the prejudices and obstacles that have, for too long, barred the way to the world of work. The odds were stacked against these authors, but
they found their vocations and their place, and this book is a testimony to their achievement. Praise should go to Gary Bourlet, who set up Learning Disability England and reminds us that it is essential to involve people like him if we are to have ‘a multi-cultural, multi-ability society’. Sarah Gordy, one of the stars of Call the Midwife and Downton Abbey, provides a fascinating account of how she became an award-winning actor, despite having Down’s syndrome. Three of the authors in Made possible have been awarded MBEs for their ground-breaking work. Michael Baron, founding member of the National Autistic Society
Our six favourite… calming gifts
1
4
Spiral liquid tube timer
Obeda fidget sensory toys collection
Watch the bubbles slowly fall to stave off stress and anxiety. Available from www.tinknstink.co.uk, from £4.99
A great selection of sensory fidget toys to keep in the car or at home. Available from www. amazon.co.uk, £15.95
2
Squease vest
Weighted blanket
Some sensory seeking autistic people find weight and deep pressure input to be calming, helping sleep or concentration. Various suppliers and prices.
5
Busy Blanket Dark Den
When inflated, the deep pressure vest applies a firm, hug-like pressure, giving you or your child a secure feeling. Trial the vest (pictured right) via www.squeasewear.com/ yourautism
3
Starlight night projector
Project the moon and stars onto your ceiling and enjoy your own personal
6
lightshow. Available from sensorydirect.com, £10.20
Easy to use pop-up tent enabling children to relax and escape to a quiet place. Available from www. busyblanket sensory.com, £69.99
Do you have an idea for our six favourites section? Email us at: YourAutismMag@nas.org.uk
Winter 2020 41
Snapshot
I’m a… pop star Aspiring pop star and model Kale Harris-Herbert starts his career in the right key, with some catchy tunes that really capture the coronavirus era Kale is 10 years old and received a diagnosis of Asperger syndrome in 2015, when he was five. His father, John Harris, tells us that Kale struggles to make friends his own age, and finds daily life quite difficult. However, he always tries his best and is becoming a fantastic advocate for autistic people, those with disabilities, and anyone who is perceived by others as different. His mother, Karla Herbert, has suggested to Kale that being ‘weird’ or different can be a really positive thing. In Kale’s own words, “being weird can make you awesome”. Kale is one third of the band the Stencil Pencils, along with his brother Johnson and his sister, Indiana. The trio, based in Milton Keynes, originally formed the band as part of a homework project. Together they wrote the song Quarantine/Covid-19, a satirical rap track about the ups and downs of lockdown life. The lyrics to the song were
From left: Indiana, Johnson and Kale 42 Your Autism
partly inspired by NHS hero Captain Sir Tom Moore who tells us “tomorrow will be a better day”. Kale also explains in the song that he has never liked PE in school, but has been inspired by fitness guru Joe Wicks. Kale, Johnson and Indiana performed Quarantine/Covid-19 for their neighbours on VE Day, which went down an absolute treat. On a similar note, the Stencil Pencils have recently written another coronavirusthemed track, called Gullible. The fun, lighthearted lyrics criticise the often-confusing government guidance on coronavirus restrictions. The political messages in their music struck a chord with local media outlets, and led to an interview on the BBC Three Counties Breakfast Show. The Stencil Pencils also recently appeared on CITV’s Scrambled!’s Got Talent. The trio stole the show with their performance of Covid-19 and ended up winning the talent show. They have now been accepted to perform on ITV’s The Voice Kids in February 2021. And the band’s charity single It’s Christmas comes out at the end of November! Listen to the Stencil Pencils at https://www.facebook.com/ stencil.pencils.5