Tag: autism

New report breaks stigma around autism and periods this Autism Awarness Month

Although a discussion about neurotypical people’s period cycles has started in recent years, the same can’t be said for those on the autism spectrum.

Many feel unheard and uninformed, with almost half (49%) of autistic people reported not understanding their period, a third (30%) said it takes as long as four-to-five years to learn to manage it, over half (59%) aren’t comfortable enough to talk about it and 16% had to teach themselves about the cycle.

Intimate wellness brand, INTIMINA, has released a report which aims to breakdown the stigma around autism and periods. Whilst empowering and informing people about the challenges that those on the autism spectrum face and offering advice from experts, Psychotherapist Steph Jones (MBACP) andConsultant Obstetrician and Gynaecologist Dr Shree Datta, on how to cope.

On average it takes four-to-five years for almost a third (30%) of autistic people to learn how to manage their period, compared to just one year for a massive 38% of neurotypical people.

Reasons for this do vary but this new research shows that it could be down to autistic people having different experiences when it comes to their senses, mental health, physical effects, communication, and knowledge of the reproductive system and period products.  

Sensory 

Hyper or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment, such as smelling or touching of objects is something that most autistic people experience. When asked if they notice the scents in menstrual products like tampons, menstrual cups and pads, 70% said yes, 66% said that it bothers them and 26% flagged odours as one of the main issues when they are on their period.

Mental Health & Physical Effects  

Most people with periods struggle with a whole range of mental and physical issues during the cycle, including bloating, depression, anxiety, headaches, back pain, cramps, cravings, tender and swollen breasts, fatigue and insomnia[1].

Almost all participants (96%) said that they experience emotional changes during a period, with over a third (38%) confirming that mood changes were in their top three worries that they had before their period.   

Alongside mood changes, 42% of autistic participants said that they were concerned about heavy bleeding during their period and 42% said they were most worried about period cramps.  

One of the autistic people who contributed a comment in the report went as far as to say that they suffered with “waves of depression, climbing anxiety, panic attacks and random crying outbursts” during their period.

Communication

The findings show that 41% of autistic people don’t feel confident talking to close friends or family about their period with another 18% feeling very unconfident. This is in contrast to the neurotypical sample where 74% said they felt either confident or very confident. Perhaps a struggle with communication is what has led 16% of autistic people to teaching themselves about periods.

Knowledge of the female reproductive system

Almost half (49%) of autistic people don’t understand their period cycle completely and when asked to identify the cervix on an image of the female reproductive system, a massive 39% of people on the autism spectrum failed to identify it correctly.

Using period products

Four out of five (83%) autistic people find period products difficult to use, with a third (34%) citing using sanitary products as the third biggest concern when it comes to their period. However almost a quarter (24%) of autistic people said that they prefer to use menstrual cups.

Psychotherapist, Steph Jones (MBACP), said: “Those on the autism spectrum, like myself, might struggle to talk about periods because they feel ashamed, or it might be connected to the social challenges experienced by many autistic people. For example, not asking for help because it leaves individuals open to the possibility of being dismissed, humiliated or invalidated.

“It’s also extremely common to experience some feelings of depression and anxiety just before a period starts. To help with this I would recommend keeping track of moods to determine whether they seem related to hormonal changes or reveal an underlying issue. Tracking will also help reduce the anxiety of not knowing when you are due to start your period. An easy way to track is to note it down in a journal or use an app to follow your cycle.”

Consultant Obstetrician and Gynaecologist for INTIMINA, Dr Shree Datta, adds: “Periods are the most natural thing in the world, with most people experiencing them, so always ask for advice because periods are part of our health cycle, not something anyone should feel embarrassed about.

“Don’t be shy to approach a doctor if simple measures such as hot water bottles, gentle exercise and pain relief do not help manage period pains. The next step may be being referred to a gynaecologist but remember that doctors help people who have heavy or painful periods every day of the week, so go and see them early if there’s a problem.”

Danela Zagar from INTIMINA, the brand behind the report, comments: “We’re on a mission to offer advice and support to everyone, no matter your background.

“As part of this, we have commissioned this research to help the voices of those on the autism spectrum be heard, help to understand the challenges that they face and overcome the stigma around this subject.

“We really hope that the report and advice within it helps many people on the autism spectrum and their families.”

As part of INTIMINA’s mission to break the taboo when it comes to talking about issues surrounding autism, the brand has made a donation to the National Autistic Society, which is the UK’s leading charity for autistic people and their families. They’ve spent decades working to provide support, guidance and advice to help create a society that works for autistic people.

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Walk for Autism fundraiser set to return for a fifth year

The team at Autism Initiatives are dusting off their trainers once more for its annual fundraising campaign Walk for Autism, which returns this March.

The charity hopes to make it the biggest one yet in its five-year history when participants from up and down the country walk 10,000 steps per day for the eight days between March 26th and World Autism Awareness Day on April 2nd.

Last year, the campaign’s participants collectively walked over an impressive 194 million steps and raised more than £621,000, making it their most successful year to date.

The money raised goes towards helping individuals with autism while supporting autism projects in the UK & Ireland that encourage the pursuit of specialist interests, promote physical activity and help autistic adults and children learn and develop every single day.

Walk for Autism Fundraising Manager Liz Oakley said: “This campaign is especially important to us as we have seen first-hand how much it can improve peoples’ lives; not just with the money raised but for all those who take part. Our aim is to create a wonderful community of likeminded people who are passionate about autism and believe they can make a difference.

“These past two years have been tough for everyone, and walking has been proven to help with mental wellbeing, which is just another positive reason to get involved. 

“Walkers can complete their steps at any time and in whatever way suits them; whether it’s walking the dog, stepping on the treadmill or conquering a long-distance hike. It’s important to remember that each and every step counts so even if you can’t get out and about steps around the garden or even around your home will all contribute.

“You can track your steps easily using a pedometer or smart phone apps to make sure you’re hitting your target. The concept is simple, but the rewards are huge.”

For this year’s theme of ‘We Walk for Autism’, Walk for Autism is encouraging people to do their walking with friends and family. Walkers can sign up on the charity’s website and begin their fundraising straight away, with the charity providing helpful tips on the fun and varied ways to raise money.

Those who sign up and pledge an upfront £20 will get a Walk for Autism t-shirt to assist in their fundraising, as well as a tutorial on how to create their very own homemade confetti canon using household items to celebrate their completion of the challenge.

Liz added: “Autism affects more than 700,000 people in the UK and Ireland each year and it’s vital that we continue to help as many of those people as possible through our fundraising efforts.”

Walk for Autism is a campaign led by charity Autism Initiatives Group who have been working to improve the lives of autistic people and their families across the UK and Ireland for almost 50 years.

You can get involved by visiting their website at:

 https://www.walkforautism.co.uk/register/walk-for-autism-2022/registrationform

Review of Autism Strategy criticises lack of progress

An independent review of the Scottish Government and COSLAs 10-year Autism Strategy has been published today.   

The strategy, which comes to an end this year, set out with the vision that by 2021 autistic people would be “respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives’.  

The review concludes: “After ten years, valuable resources have been created and new and additional services delivered. However, real change for many autistic people, both in how they engage with services and in how they are supported to live productive lives, is not as evident. To have a greater impact, the services and support need to have greater reach, become embedded and be sustained.”  

This echoes the findings from the Cross-Party Group on Autism’s own 2020 review the ‘Accountability Gap’ which found (from a survey of 900) that 72% of autistic people and families did not have enough support to meet their needs across a number of areas including education, care and employment.   

In the lead up to the May Holyrood Election National Autistic Society Scotland together with partners Scottish Autism and ENABLE Scotland campaigned under the banner of ‘Our Voice Our Rights’ for a Commissioner to promote and protect the rights of individuals and their families.   

This resulted in a commitment in the SNP Manifesto to introduce a Commissioner as part of a Learning Disability, Autism and Neurodiversity Bill. Scoping work on this is due to begin shortly.  

Nick Ward, Director of National Autistic Society Scotland, (above) said: “What is clear from today’s review of the Scottish Strategy for Autism is that autistic people and their families are still, after ten years, not getting the vital support that they need to live meaningful and fulfilled lives.

“The review echoes findings from last year’s ‘Accountability Gap’ report produced by the Cross-Party Group on Autism which found that while progress had been made, 72% of individuals and their families did not get enough support to meet their needs.      

“Today’s review sets out some positive ways forward and we are delighted that Scottish Government has committed to establishing a Commissioner. We believe a Commissioner with robust powers to uphold rights, challenge bad practice and promote good will lever real change.”  

Suzanne from Dunfermline was part of the ‘Our Voice Our Rights’ campaign and has an autistic son called Callum. She said: “Callum has a lot of challenges, he is constantly having to deal with sensory issues and sounds and he needs someone supporting him most of the time.

“It’s difficult for people to understand what he is saying and so we need to be with him when he is out to help as well as explain his compulsion to touch people.   

“When Covid hit a lot of the services withdrew leaving us to deal with health education and social work issues. Over time that has got better but we’re still not receiving the level of support we had before the pandemic.  

Suzanne (with Callum, above) added: “I think there needs to be a lot more joined up thinking, sometimes we end up going from service to service – there needs to be someone holding the system together, someone at a national level I can go to if there is an issue.   

“My hope is that when Callum leaves school he doesn’t end up sitting in a day centre all the time and that there are opportunities for him. He loves buses and would love to be a bus driver. That may not be possible but working or volunteering in and around buses would be amazing for him.”  

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Dobbies launches Edinburgh 2021 festive events programme

New quiet grottos introduced at the Edinburgh store

With colder months on the way, the UK’s leading garden centre retailer, Dobbies Garden Centres, launches its events for the festive season, with booking open now in the Edinburgh store.

The ever-popular Santa’s Grotto experience is back. As one of the most loved, traditional festive experiences at Dobbies, little ones in Edinburgh will love walking through the outdoor woodland, spotting Christmas characters along the way before being welcomed by Santa and receiving a special gift. For those looking to create a lasting memory, a photo can be purchased.

New for 2021, at 50 stores across the UK, will be Quiet Grottos. Working in partnership with Autism Together, there will be Santa visits which are supportive of children with additional needs, considering sound and visual elements, and helping to minimise anxiety. 

Michelle Walklett, Head of Autism Together’s Autism Training and Advisory Service, said: “As a specialist UK charity supporting autistic people, we’re pleased to be working with Dobbies in Edinburgh to help enhance their Christmas Grotto experience for visitors with autism and other sensory needs.

“Through this partnership, we’ll also be delivering autism awareness training for Santa and all his elves and helpers in time for the festive season.”

Christmas is not just for children, and Dobbies is extending the festive fun to four-legged friends. At Santa Paws in Edinburgh, dogs have the chance to meet Santa, along with the whole family. Guests are invited to bring their cameras to get a snap, making it the perfect Christmas card photo opportunity.

At Santa’s Breakfast, families will be able to enjoy the ever-popular Dobbies’ breakfast. The festive event includes breakfast options for adults and children, followed by fun games and a visit from Santa with a special gift for each child. This event is suited to families with children aged 10 and under.

Sarah Murray, Partnership and Events Manager, said: “At Dobbies we want to offer families an opportunity to come together and make memories that last a lifetime. There truly is nothing more magical than Christmas for a child and our range of events helps to bring the season to life for all the family.”

Dobbies’ Edinburgh Christmas events are available to view online, with customers requested to book in advance. Also new for 2021 is the opportunity to add a donation to the price of an event ticket, for Dobbies’ National Charity Partner, Teenage Cancer Trust.

Bookings can be made at https://www.dobbies.com/events 

·         Christmas Afternoon Tea is available in 66 stores and starts on 1 November, £12.95 per adult and £6.95 per child.

·         Santa’s Grotto starts on 27 November in all 50 stores, from £11.99 per child.

·         Santa’s Breakfast is available in 66 stores and starts on 4 December, £13.99 per child and from £6.99 per adult.

·         Santa Paws starts on 4 December in 23 stores, £6.99 for dogs, £11.99 for children.

·         Quiet Grottos will be hosted on 10 December in 50 stores, from £11.99 per child.

Dobbies offers Book with Confidence. For more info: https://www.dobbies.com/book-with-confidence

10,000 autistic people to take part in the UK’s largest study of autism

An ambitious new research project, Spectrum 10K, launches today and will recruit 10,000 autistic individuals, as well as their relatives, living in the UK.

There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not

Simon Baron-Cohen

Spectrum 10K is led by researchers at the world-leading Autism Research Centre (ARC), the University of Cambridge, together with the Wellcome Sanger Institute and University of California Los Angeles (UCLA) and will study how biological and environmental factors impact on the wellbeing of autistic individuals.

In the UK, there are approximately 700,000 autistic individuals. The level of support needed by autistic individuals varies considerably. Many autistic people have additional physical health conditions such as epilepsy, or mental health conditions such as anxiety or depression.

It is unclear what gives rise to the diversity within the autism spectrum or why some autistic people have better outcomes than others. The project aims to answer this question and to identify what support works best for each individual.

Professor Simon Baron-Cohen, leading Spectrum 10K and Director of the ARC, explained: “There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not.”

Individuals of all ages, genders, ethnicities and intellectual capacities will take part in Spectrum 10K. Eligible participants join by completing an online questionnaire and providing a DNA saliva sample by post.

Autistic participants involved in Spectrum 10K can also invite their biological relatives (autistic or otherwise) to participate.

Information collected from the questionnaire and DNA saliva sample, and information from health records will be used to increase knowledge and understanding of wellbeing in autism.

Dr James Cusack, CEO of the autism research charity Autistica and an autistic person, said: “We are delighted to support Spectrum 10K. This project enables autistic people to participate in and shape autism research to build a future where support is tailored to every individual’s needs.”

The Spectrum 10K team views autism as an example of neurodiversity and is opposed to eugenics or looking for a cure for preventing or eradicating autism itself.  Instead, their research aims to identify types of support and treatment which alleviate unwanted symptoms and co-occurring conditions that cause autistic people distress.

The Spectrum 10K team collaborates with an Advisory Panel consisting of autistic individuals, parents of autistic children, clinicians, and autism charity representatives to ensure Spectrum 10K is designed in a way that best serves the autistic community.

27 specialist NHS sites around the UK are also helping with recruitment for Spectrum 10K.

Dr Venkat Reddy, Consultant Neurodevelopmental Paediatrician in the Community Child Health Services at Cambridgeshire and Peterborough NHS Foundation Trust, said: “There is a need to conduct further research into autism and co-occurring conditions to enable researchers and clinicians to build a better understanding of autism.

“I would encourage autistic individuals and their families to consider taking part in Spectrum 10K.”

Dr Anna and Alastair Gadney, parents of a teenager with autism and learning difficulties: “We have been exploring, over many years, how to implement the best support for our son.

“We wholeheartedly endorse Spectrum 10K and hope our involvement can help increase understanding of autism and in-turn support many families out there.”

Chris Packham, naturalist and TV presenter who is also autistic, said: “I’m honoured to be an ambassador of Spectrum 10K because I believe in the value of science to inform the support services that autistic kids and adults will need.”

Paddy McGuinness, actor, comedian, television presenter, and father of three autistic children, said: “As a parent of three autistic children, I am really excited to support Spectrum 10K.

“This research is important to help us understand what makes every autistic person different, and how best to support them.”

Recruitment for Spectrum 10K is now open. Autistic children under the age of 16 must be registered by their parent or legal guardian. Autistic adults who lack the capacity to consent by themselves must be registered by a carer/or family member.

To register, participants should visit www.spectrum10k.org

Coalition raises concerns as new figures highlight slump in support for vulnerable children

  • Near doubling in the number of pupils with additional support needs since 2012
  • Decline in the number of specialist ASN teachers by 578 since 2012
  • 500 per cent increase in those with mental health problems

An alliance of leading providers of children’s services, the Scottish Children’s Services Coalition (SCSC), has called for greater resourcing to support children and young people with additional support needs (ASN), both during and after the Covid-19 crisis.

The call comes as new figures out today (23rd March 2021) from the annual Scottish Government pupil census, reveal that while the number of specialist ASN teachers has slumped to a record low, the number of those pupils with ASN has escalated dramatically.

Between 2012 and 2020 the number of full-time equivalent ASN teachers (publicly funded primary, secondary, special and centrally employed) has fallen from 3,389 to 2,811, a decrease of 578 teachers (17%).

This fall is against the background of an overall increase by 92.2 per cent since 2012 in the number of pupils identified with ASN, from 118,034 to 226,838 in 2020,representing just under a third of all pupils (32.3 per cent).

The number of those with autism spectrum disorder has increased by over 150 per cent (from 8,650 to 21,820) between 2012 and 2020, those with social, emotional and behavioural difficulties by over 125 per cent (from 23,485 to 52,921) and those with mental health problems by 500 per cent (from 1,254 to 7,524).

Against a background of a per pupil cut in spending and in specialist support, the SCSC has called for greater resourcing from both the Scottish Government and local authorities to ensure that those with ASN in Scotland’s schools, who disproportionately come from lower income families and areas of deprivation, are getting the care and support that they need. 

The coalition has also raised concerns about the effectiveness of a presumption of mainstreaming, meaning that all pupils are educated in a mainstream educational environment unless exceptional circumstances apply.

A spokesperson for the SCSC commented: “It is vital that those with ASN get the care and support they need, especially during and as we come out of the current Covid-19 crisis.

“This is also key if we are to genuinely close the educational attainment gap as we know that those with ASN disproportionately come from lower income families and areas of deprivation. Such a situation is clearly challenging in an environment of austerity and evidence of cuts in spending per pupil with ASN and in the number of specialist teachers supporting this group.

“While we also support the presumption of mainstreaming, which means that all children and young people are educated in a mainstream educational environment unless exceptional circumstances apply, it is clearly difficult to see how this is functioning properly for all those with ASN given this fall in specialist support and increase in the number of those identified with conditions such as autism and mental health problems.

“The Scottish Government and local authorities need to work together to provide the necessary resourcing to address the needs of those children and young people with ASN, who represent some of the most vulnerable individuals in our society. “

‘Our Voice Our Rights’: Charities call for Autism Commissioner

ENABLE Scotland, National Autistic Society Scotland and Scottish Autism have today launched the ‘Our Voice Our Rights’ Campaign calling on the major political parties to commit to a Commissioner for autistic people and people with a learning disability at the forthcoming Holyrood election. 

The ‘Our Voice Our Rights’ campaign aims to make Scotland the best country in the world for the 56,000 autistic people, the 120,000 people with a learning disability and their families in Scotland. A country where human rights are respected and upheld; everyone has equal access to the services and support they need throughout their lives; and where autistic people and people with a learning disability are active citizens and fully supported to fulfil their potential.  

While there have been many ambitious and well-intentioned strategies over the years from Government and partners, and an extensive regulatory framework, the charities hear day in day out how too many people are struggling to access their human rights to education, work, a family life, healthcare, to high quality social care services, and to be free from discrimination in their communities. 

Many individuals and their families are exhausted from fighting tooth and nail to get the much-needed support and status as equal citizens. A fight that sadly, they often lose, leaving many in crisis, something brought into sharp focus by the pandemic and the pressures on the system. 

In the lead up to the Scottish Parliamentary Elections in May 2021 the three charities are standing together with autistic people and people who have a learning disability to say ‘enough is enough’ and calling on all the major political parties in Scotland to commit to a Commissioner to ensure real change. 

The Commissioner would be the first of its kind in the world, established in law to champion the human rights of autistic people and people with a learning disability.  

They would be a powerful voice, improving access to services and advocating on people’s behalf when they cannot and importantly helping people have the choice and control to live a good life, free from discrimination.   

They would close the current gap – between what the law says and what actually happens in reality. They would lead improvements and importantly people would also have recourse when the system falls short and fails to deliver for them.  

The charities have launched the campaign alongside autistic people, people with a learning disability and families including the broadcaster Stuart Cosgrove.   

A website is now live with a series of videos featuring people from across Scotland making the case for change. People are also being encouraged to get involved and to contact the party leaders to call for a Commissioner for autistic people and people with a learning disability to be included in their election manifestos.  

Peter McMahon who has a learning disability and is a member of ENABLE Scotland said: “We need a Commissioner for Learning Disability and Autism so that people who have a learning disability like me aren’t put on the back burner or forgotten about.

“With a Commissioner working with us we can improve access to services and speak up for people when they cannot. Most importantly we can help people live good lives with choice and control and free from discrimination. People with learning disabilities feel invisible, we don’t want to be the invisible people any more and feel a Commissioner would help us.”

Broadcaster Stuart Cosgrove who has an autistic son said: “This campaign has the capacity for real positive change – As a family we’ve been lucky in that Jack got his autism diagnosis early on as a child but like all parents I worry about what happens when he grows up and leaves school.  

“We of course want him to be independent, have his own place, a relationship, a job, all the usual things that parents hope for, but we also know those are likely to be challenging for him – he’s going to need that bit extra help and support.     

“I believe by and large Scotland has a caring culture but establishing a Commissioner at a national level with a legal obligation to look into the different aspects of public life would make a huge difference. It would help Scotland lead the way to creating a society that fully includes and values autistic people.” 

 

Local author generously donates book royalties to charity

A generous Edinburgh author has committed to donating royalties from her latest book to a leading education and social care charity.

Debbie Irving, who was born and raised in Edinburgh, has published her book, ‘My Brother is Different’, the royalties of which will be donated to LOVE learning.

This book is aimed at children with brothers and sisters who have autism, as a tool for them to better understand and explain why their siblings and other children might behave differently to them.

The picture book tells the story of how a brother and sister discover that their little brother’s autism can be difficult for them at school, but with some help from their mother, they realise that he is special in a good way too.

Written with experts on children’s mental health, ‘My Brother is Different’ is a way to help young children cope with autism and the effects it can have on their family and friends.

It has been estimated that more than 50,000 people in Scotland have an autism spectrum disorder. 1

Debbie, who is currently the Head of HR for an engineering company based in Fife, worked at Edinburgh City Libraries for nearly 18 years. She was inspired to write her book after a personal experience that took place two years ago when she went passed a school’s playground.

Debbie witnessed a young boy with autism experiencing a breakdown and was surprised by the looks of confusion in the faces of the other children, who did not understand what was happening to their friend.

Debbie who is a trustee of LOVE Learning has partnered with the charity to illustrate and print the book and has decided to donate all royalties in full to help with fundraising. The charity, which acquired Edinburgh’s much-loved LOVE Gorgie Farm, works to provide alternative education and social care for children with mental health problems and learning difficulties.

Debbie Irving and LOVE Learning intend to continue releasing several books for children, from short stories to novels, on themes concerning mental health, additional learning needs and the changes children go through as they grow up.

Debbie Irving, local author of ‘My Brother is Different’ commented: “I am thrilled to see a project like this book take off and I truly hope that ‘My Brother is Different’ serves as a tool to help many children understand more about autism and about what their sibling and friends with this condition go through.

“LOVE learning has been incredibly supportive during the whole process and I decided to donate all royalties to this charity so that the book can contribute to their mission of helping give children the best possible start in life.”

Lynn Bell, CEO of LOVE learning added: “We are so grateful that Debbie decided to so generously donate the royalties of her book to LOVE learning and look forward to keeping supporting her in her future work.

“Too often we see children with autism facing exclusion in many social and educational settings. We believe that ’My Brother is Different’ is a great educational tool for children to better understand autism and help harness love and compassion amongst siblings and friends.”

‘My Brother is Different’ can currently be purchased online as hard copy on LOVE Learning website and as an e-book on Amazon. 

Autistic people struggling to get vital support, says new report

– 72% of people responding to a survey about their experiences of the Scottish Government and COSLA’s 10 year Strategy for Autism reported that they did not have enough support to meet their needs – 

The findings are published in today’s ‘The Accountability Gap’, a report from the Cross-Party Group (CPG) on Autism’s review of the Scottish Government and COSLA’s 10-year Strategy for Autism. 

Supported by charities National Autistic Society Scotland and Scottish Autism, who provide Joint-Secretariat to the CPG, a survey carried out as part of the review also found that: 

  • 72% of respondents said they did not have enough support to meet their needs 
  • 78% of respondents said that it was not easy accessing support locally 
  • 50% felt that autism awareness among the general public had not improved 
  • 69% said that with more support they would feel less isolated 
  • 36% said they received no support within 12 months of receiving a diagnosis. 

The CPG on Autism is Co-Convened by Annie Wells MSP and Alexander Burnett MSP, and has a large membership that comprises of MSPs, autistic people, families, organisations and professionals from across Scotland. The group meets regularly looking at issues faced by autistic people and families.  

In 2011, the Scottish Government together with COSLA published a 10-year Scottish Strategy for Autism that set out priorities and aimed to deliver strategic action for autistic people and their families in Scotland.  

The CPG on Autism undertook its review from May 2019 to January 2020 and heard first-hand the difficulties faced by autistic people and their families in Scotland. It found widespread recognition that the Government’s strategy set out a welcome vision and was well-intentioned however the majority of people who participated said there had been limited impact for many people in a number of areas including autism diagnosis and post-diagnostic support, as well as support in education, care and employment. 

It also highlighted how a lack of accountability at local level, is leaving autistic people and families fighting, often with little success, to get the support they need. 

The review makes 10 recommendations that aim to help improve the lives of autistic people that the Scottish Government and COSLA should consider when the Strategy comes to the end of its lifespan in 2021. These include: 

  • Solving the accountability gap by establishing a new Commissioner role, whose remit includes ensuing that autistic people and families get the support they need. 
  • Developing a new Scottish Strategy for Autism that is co-created between autistic people, families, charities, COSLA and the Government, is appropriately funded and delivers real sustainable change. 

Co-Convener of the Cross-Party Group on Autism, Alexander Burnett MSP, said: “The majority view of the hundreds of people who have been involved in our review is that the ambition and aspiration set out in the Scottish Government’s strategy has not been realised in practice and that many autistic people and their families lack the appropriate levels of support in order to thrive in our society. 

“We found that there are concerns surrounding a lack of training for professionals, as well as a lack of pre and post diagnosis support across a number of areas 2including social care, education, transition into adulthood, housing and employment. 

“In the context of the pandemic we believe the report’s recommendations are more important than ever for Scottish Government, COSLA and partners to consider when planning for what comes next when the strategy is due to come to an end next year. 

“Over the years, we have seen numerous reports and reviews on autism, however there seems to be little evidence to suggest any real change is being delivered at a local level.

“This is a system that is repeatedly failing to meet the rights and needs of autistic people. We must therefore focus on systemic sustainable change to enable better access to education, health, social and community services for autistic people and their families.” 

Kirsteen, a mother from Aberdeen said: “I have an autistic son called Toby who is now a young adult. When Toby was younger he received support from the school, college and the local authority but virtually stopped overnight when he became 16.

“Toby needs a lot of support and without it we struggled to cope as a family. Ultimately, we reached crisis point and things escalated even to the extent the police got involved as he became very frustrated and lashed out.

“Toby is now living in his own flat which initially I had to pay for as the local authority did not provide anything that met his needs. They had offered a place in a hostel for people with drug issues which is completely inappropriate. 

“I’m now selling my place so I can move closer to Toby as I desperately want to make sure he is supported. I do this because my son and daughters mean the world to me but it’s hugely stressful to hold down a full-time career in nursing and provide support for someone with such complex needs. 

“I don’t feel things have got better over the last few years and I don’t think they will change unless Scotland implements legislation – committees and reviews on autism make no difference.” 

Nick Ward, Director of National Autistic Society Scotland, said: “Today’s ‘Accountability Gap’ report from the Cross-Party Group paints a stark picture of the struggles that Scotland’s 56,000 autistic people and their families face in order to get the services they are entitled to – a struggle which sadly they often lose leaving them frustrated, distraught and often in crisis.

“The Government must now look to build on the 10-year strategy by building accountability into the system so people get the services and support they so desperately need.” 

Charlene Tait, Deputy Chief Executive Officer at Scottish Autism, said: “We recognise the Scottish Government’s commitment through its 10-year strategy to set out a landscape where autistic people and their families have access to the services and support they need. 

“However, there is an evident ‘accountability gap’ between service provision and what is available.  The reality is that many autistic people and their families often have to fight to get the vital services and support to which they are entitled. 

“Over the years, we have seen numerous reports and reviews on autism, however there seems to be little evidence to suggest any real change is being delivered at a local level. This is a system that is repeatedly failing to meet the rights and needs of autistic people. 

“We must therefore focus on systemic sustainable change to enable better access to education, health, social and community services for autistic people and their families.”

CPG-on-Autism-report-The-Accountability-Gap-12.10.2020Download

Autism: Supporting and celebrating different minds

£250,000 funding to support new service for people with autism.

A new national support service will help children and adults diagnosed with autism to understand and embrace their identity.

The service will provide online support on a range of issues, offer practical help and connect autistic people and their families with peers.

Backed by £250,000 Scottish Government funding, the pilot National Post Diagnostic Support Programme will be led by Scottish Autism, in partnership with the National Autistic Society, Autism Initiatives and Autistic People’s Organisations.

A new awareness campaign, which aims to challenge stigma and myths to give the general public a clearer understanding of autism, is also being launched.

Speaking at the national Scottish Strategy for Autism’s annual conference, held virtually this year, Mental Health Minister Clare Haughey said: “We know that the restrictions put in place due to the coronavirus (COVID-19) pandemic have been particularly hard for autistic people and their families, with normal routines changed dramatically. 

“This new programme will allow autistic people across Scotland to access vital support, building on the excellent services already provided by third sector organisations, which have been well adapted to continue throughout the pandemic.

“We also know that there is sadly still a stigma associated with autism, and that’s why we today we are also launching our ‘Different minds. One Scotland’ campaign.

“Crucially, the campaign has been developed with autistic people. It aims to help the public understand autism, to be more accepting of the different qualities and attributes of autistic people.”

Autistic spokesperson Jasmine said: “The way I view the world is shaped by me being autistic, and my experiences have been shaped by me being autistic.

“I want to ensure that there is at least one autistic child who feels a little bit less alone – a little bit less like the world is against them –  then I’d feel like the campaign has accomplished everything it set out to.”

Charlene Tait, Deputy CEO at Scottish Autism said: “The delivery of a national post diagnostic service is a much needed and welcome step forward in Scotland. This new service brings the collective knowledge and experience of several charity partners that will work collaboratively to provide a wide range of information and support for autistic people of all ages and their families.

“This new service will focus on ensuring families are better informed and empowered after a diagnosis whilst also supporting autistic individuals to embrace their identity and widen their peer group.”                                          

Protecting Scotland’s Future: the Government’s Programme for Scotland 2019 – 20 committed to develop an online autism support service to help people live positively with autism, while reducing the demand for services through CAMHS, Psychological Therapies and other public services.

https://youtu.be/0TAuQUlpdvU

Find out more about the campaign at http://differentminds.scot.

A Scottish Government omnibus survey from September 2020 found that just 42% of people feel they have a good understanding of autism, over half (50.75%) think that autism is a mental health condition. In addition, 86% of respondents feel that there is value in learning from autistic people.