www.aspie-editorial.com

Many autistic people are still not receiving the good quality care they need, according to a new report from the Care Quality Commission (CQC), the regulator of health and social care services in England. The report, which is about the state of care in 2019/20, highlights the impact the coronavirus pandemic has had on the sector.

This simply cannot continue and underlines the urgent need to invest in mental health and social care support for autistic people:

The State of Care report is the CQC’s annual assessment of health and social care services in England, including those that cater for autistic people, over the past year. It looks at care both before the outbreak of coronavirus and during the pandemic. To put the report together, the CQC looked data gathered from inspections of services, along with other information including from people who use their services, their families and carers.

What the report says

One of the most important findings is that, the number of hospital inpatient wards for autistic people and/or people with a learning disability found to be poor quality has increased. Many autistic people continue to live in mental health hospitals, despite Government promises to change this. The report highlights that inspectors found poor care in many of these wards. Overall, the proportion of services rated as inadequate rose from 4% to 13%, which is extremely worrying.

The report also finds that as a result of the pandemic, existing problems in social care have been not only “exposed, but exacerbated.” These challenges included access to PPE, testing, staffing and less coordinated support than that available for the NHS. The CQC says that a long-term funding solution must be implemented for the social care sector, which remains in need of both investment and workforce planning. Whilst the Government has made short-term interventions to stabilise the system during the pandemic, the need for a longer-term plan still needs to be tackled and these issues must be “urgently” addressed. We strongly agree with this and are calling on the Chancellor to invest in the social care support that autistic people and their families need. 

Our response

Jane Harris, Director of External Affairs at the National Autistic Society, said: “This damning report shows a worrying increase in the number of hospitals found to be poor quality. This simply cannot continue. 

“Autism is not a mental health condition. It’s wrong that hundreds of autistic children and adults are living in mental health hospitals, often inappropriately, many miles away from home and unable to see family and friends.

“But without the right mental health and social care support in the community, too many autistic people really struggle, eventually hitting complete crisis and facing being put in a hospital that doesn’t meet their needs.

“The Government must put this right by investing in mental health and social care support for autistic people, and crucially reviewing the Mental Health Act so that autistic people aren’t inappropriately sectioned. Only this will end this vicious cycle.”

Further information

• Read the CQC’s State of Care report in full.
• Please sign our letter to the Chancellor calling for investment in support and services for autistic people.
• For confidential support and advice, including our Autism Helpline and Autism Inpatient Mental Health Service casework service, visit the Help and Support section of our website.
• To find out more about local and national services for autistic people and their families, visit our Autism Services Directory.

Source:

https://www.autism.org.uk/what-we-do/news/cqc-new-report

Heather Cook  â€¢  Follow October 8, 2020

You watch your kid trying to do homeschool online, but they can’t focus, stay on a call with the teacher, or get work done. You’re frustrated and want to help, but you’ve tried what the experts suggested, and it’s not doing much.

The following tips have been amassed from the repeated comments of many autistic people I’ve encountered, as well as my own experiences as an autistic woman and high school teacher. We’ve struggled with the same things your kid is going through, and have learned what works for us. That said, everyone on the spectrum has different strengths and challenges, so not all of these will help; try some and see what works for your student.

Calm the nervous system

Learning takes quite a bit of cognitive energy, and that doesn’t go well with being wound up, shut off, anxious, or upset. When you’re on edge, you don’t get your best work done, either. Quite a bit of bouncy, frenzied, or unresponsive behavior comes from a disorganized nervous system. Reorganizing it involves making sure each of the senses have enough input without getting overloaded.

1. Identify which senses need extra stimulation (if your student is wiggly, they might need more proprioception — the body’s awareness of where it is in space), and which senses need less (do sounds hurt?). Then look for different ways to stimulate or reduce the senses that need it. For example:

2. Let your student stim, jump around, climb, swing, spin, roll, rock, brush their skin with something scratchy or soft, flap their hands, or whatever else helps their body feel good. These things may look odd, but can be incredibly calming and organizing to an overloaded nervous system.

3. Try a weighted lap blanket, weighted vest, or simply holding anything heavy, like a pile of textbooks. The added muscle resistance can be relaxing.

4. Add aromatherapy essential oils to the study room. Different scents can calm, invigorate, or help focus. Let your student help choose ones that work for him. If he doesn’t like the scent, it doesn’t matter what it is “supposed to” do, it won’t help.

5. Background music can be helpful for some, but if your student is trying to study, read, or do anything that involves language, make sure the music does not have words — no singing. The brain has to work overtime to sort out two sources of language input at once, which can interfere with learning and drain energy and endurance faster. Try classical music, nature sounds, or ambient (think spa music).

6. Is your student a wiggler? Try sitting her on a wobble cushion or replace her chair with a yoga ball that she can bounce on while working. Either will activate core muscles and achieve the proprioceptive input the wiggling is trying to get.

7. Some people report headaches or irritability from fluorescent lights, so try replacing CFL bulbs with something else and see if that helps. Take advantage of any natural lighting you have, which is gentler on the nervous system than artificial lights.

Set up your environment for success

When too much is going on around you, it can be difficult to concentrate. However, how much is “too much” varies from person to person. For many autistic people, how much we can tolerate without side effects is much less than for neurotypicals. In fact, things that others consider white noise or minor distractions may be literally impossible to ignore.
Try to make the study area as calming and distraction-free as possible.

1. Let your student work in a room alone with the door closed.

2. Turn off the television or stereo in the next room if it can be overheard, or try wearing ear protectors to reduce sounds.

3. Dim or brighten lights to suit your student’s personal comfort level. This might be much dimmer than you are comfortable with, so resist turning on more lights.

4. The glare on glossy textbooks and screens make reading difficult and even cause headaches. Try putting a matte screen protector or colored film (translucent report covers or notebook dividers work well) over them to reduce eye strain and increase endurance.

Make taking breaks OK

After only about 20 minutes of sitting, blood starts to drain from the brain and pool in the butt. Getting up and moving frequently, even for a few minutes, keeps us all thinking more clearly and feeling good.

1. If your student feels the need to get up and move, walk away from the computer, jump around, or get a snack, please let them. It may appear like they’re not focusing, but short breaks can help them stick with it long enough to finish.

2. Optometrists recommend looking up from the computer or book for 20 seconds to a minute, several times an hour, and focusing on something more than 20 feet away (which is usually outside) to reduce eye strain and associated headaches.

3. Brain Gym exercises are easy and quick ways to stimulate different parts of the brain to work better together. Doing these at break times can help refocus.

4. Connect with nature. Even something as small as looking through a window to watch tree leaves rustle in the wind can have a calming effect on the nervous system. Repeated exposure increases the benefits.

5. All this moving may look as if your student is not concentrating, but classrooms of still, silent children do more for teachers’ sanity than children’s learning. While at home, take advantage of the ability to experiment with what best facilitates your student’s success.

6. On that note, teachers often insist kids look at them when they talk, but unless she needs to interpret visual information, use sign language, or read lips, there is no actual correlation between attention and the direction someone is looking. You can drive and follow your kid’s argument in the backseat just fine. If your student is not looking at the screen, it doesn’t necessarily mean she’s not paying attention. Ask her a question about the material if you want to check for comprehension.

7. Also, make not taking breaks OK. If your student gets engrossed in his work and doesn’t want to quit, try not to force him out of it unless it is really necessary. He’ll get a lot more done, more willingly, even if it means adjusting a routine or plan.

Let them rest afterward

Autistic brains are great at some things, but often tire more quickly from social activities (yes, video school counts), and we need more downtime to recuperate. If you ask us to go straight from school to activities or therapy to family time in short order, it is more likely to produce unwanted behaviors than to teach us how to be social.

1. When school is over for the day, let your student have some downtime to use as they choose. Don’t make this a reward that needs to be earned; it is just part of the plan.

2. Especially when things did not go well, that is likely a sign she needs the downtime more than ever. Taking away her chance to recuperate when that is exactly what she needs most will make both of your lives more difficult for the rest of the day (or longer).

3. Remember that you’re not on your best behavior when you’re tired and stressed, either. We get to that point faster than you do, and social time gets us there much faster.

Involve your student in these decisions

No one likes to be micromanaged, and we all work better when we feel we have some control over when and how we work. That is no less true for an autistic kid or teen.

1. At the beginning of each school day, agree on what you both think is a reasonable amount of work to get done. When it is done, even if it is faster than expected, don’t push for more. Let your student rest or play.

2. Agree in advance on acceptable rest and play options. Make sure some of them are off-screen, but they don’t all have to be. Unstructured free play is essential to healthy brain development.

3. Ask your student’s input on any changes you propose, and ask him later how they feel. You might be surprised about what helps.

Not all of these suggestions will work for both your student and you, and even the ones that do work won’t work all the time. I hope I have offered some ideas for removing impediments that might be preventing your student from working, and added to the toolbox of resources your family can draw upon.

Source:

Published on 12 August 2020

The Government has published guidance on the support autistic people who are unwell with COVID-19 in inpatient care should be able to get.

We have outlined the key points that affect support for autistic children and adults in inpatient care, for example in a mental health hospital, who have one of the following:

•  any symptoms of COVID-19
• a confirmed case of COVID-19
• an underlying health condition which makes them part of the ‘extremely vulnerable’ group – also known as the ‘shielding’ group.

What has changed?

Testing: If an autistic person is suspected to have COVID-19 , they should be tested straight away and health professionals should keep the person under regular observation to make sure their symptoms don’t get worse.

Shielding: If you or the autistic person you support is also part of the ‘extremely clinically vulnerable’, or ‘shielding’ group, they should be prioritised for an ensuite room. This is to protect them from the virus. Hospitals should reorganise their layout and staff to make sure extremely vulnerable people are protected. If an ensuite room isn’t available, people should be put in a side bay/ward as quickly as they can to reduce the risk of getting coronavirus, or if they have the virus, of passing it on.

People who have COVID-19 will have to self-isolate as much as possible in inpatient care to stop the virus from spreading.

What if I or the person I support gets coronavirus and becomes really unwell?

• If this happens, you or the person you support may be transferred to acute care in a hospital. Staff in the hospital and the commissioners should work together and follow their regular guidelines on transferring patients from inpatient care. They should explain what is happening and help you or the person you support to prepare for it.
• Health professionals caring for the person you support must continue to avoid restrictive practices where at all possible. You or the person you support might find it helpful to use ourHealth Passport, which helps autistic people communicate their needs to doctors, nurses and other healthcare professionals.
• If important decisions need to be made, they should be discussed with you, or the person you support directly as well as family members or carers. All the relevant information should be accessible, so everyone understands what’s happening. 

How should mental health hospitals stop the coronavirus from spreading?

• If someone has symptoms or a confirmed case of COVID-19, they need to self-isolate and get tested immediately.
• If an autistic person has symptoms or a confirmed case of the virus, staff in the service should draw up a management and isolation plan for that person. This should take into account things that might be difficult for an autistic person, for example if a staff member wears personal protective equipment (PPE), which could be frightening.
• You have to be told if another person on the ward has been confirmed with COVID-19. Staff should also tell you if any changes have been made to the way they care for you or the person you support because they’re trying to stop the virus from spreading.
• Autistic people might find it difficult to understand social distancing rules, especially in an environment like a mental health hospital. If you, or the person you support, do struggle, staff in the service must carry out case-by-case reviews, using legal guidance about how to support individuals.

Continue Reading …

https://www.autism.org.uk/what-we-do/news/coronavirus-supporting-autistic-people-in-inpatien

Published on 20 August 2020

As the science about the spread of the coronavirus has developed over the last few months, the Government’s view on the importance of face coverings has changed. The science now shows that if people are in enclosed spaces, for example on a train or in a shop, face coverings can help protect people from getting and transmitting coronavirus if most people wear one.

Many autistic people will be able to wear a face covering and we have heard from lots of people who have prepared themselves for this change. But for some autistic people it will be too hard. This might be because of the sensory differences autistic people experience, or they might become really distressed or want to remove their mask. So, there are important exemptions in place for autistic people who will struggle to wear a mask.

We are working with autistic people to develop information and tips for you if you want to wear a mask.

From 31 July, face coverings are now mandatory and should be worn in public indoor venues unless you have a legitimate reason not to wear one.

It is not mandatory to wear face coverings in:

• Eat-in restaurants and pubs
• Gyms

The Government has said that you don’t need to wear a face covering if you have a legitimate reason not to, which includes:

• Young children under the age of 11 (Public Health England do not recommended face coverings for children under the age of 3 for health and safety reasons)
• Not being able to 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
• If you are travelling with or providing assistance to someone who relies on lip reading to communicate
• To avoid harm or injury, or the risk of harm or injury, to yourself or others

If you do wear a face covering, there are times when you are allowed to remove it when you’re asked to:

• In a bank, building society, or post office for identification
• By shop staff for identification, for example when buying age-restricted products like alcohol
• Speaking with people who rely on lip reading, facial expressions and clear sound. Some may ask you, either verbally or in writing, to remove your covering to help with communication.

It won’t be compulsory for shop or supermarket staff to wear face coverings, but many staff will wear masks, or be behind screens.

On public transport

In England, 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, which include:

• if you are younger than 11 years old
• 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
• if you are travelling with or helping someone who relies on lip reading to communicate
• to avoid harm or injury to you or others.

This means that if you or the person you support is autistic and finds putting a face covering on really hard or distressing, you don’t have to wear one. The Government’s list isn’t exhaustive, which means there could be other reasons why you don’t have to wear a face covering too.

We have told the Government that transport staff and the public need to know about these exemptions so that you or the person you support aren’t challenged by staff, the public or the British Transport Police. We have produced an information sheet that you can share with transport staff if you are asked why you are not wearing a face covering and you can also download our I am Autistic card.

What to do if someone asks you why you’re not wearing a face covering

You do not need to prove that you are autistic to be exempt. But, we recommend you download and print our information sheet that you can share if you are asked why you are not wearing a face covering and you can also download our I Am Autistic Card. 

• Download our information sheet
• Download our I am Autistic Card
• Download our My Child is Autistic Card
• Download our This Person is Autistic Card

If you are challenged and would prefer to use the non-branded exemption cards you can

• Download the exemption cards – print format 
• Download the exemption cards – badge format 
• Download the exemption cards – mobile format 

If you are challenged or harassed because you are not wearing a face covering, try and speak to a staff member or show them your I am Autistic card. If you don’t feel comfortable or safe to do so, you can report this to the police. It’s not okay for people, whether that’s the public or staff, to challenge people aggressively.

Individual places’ rules on face coverings

We have been hearing some businesses are going beyond the Government guidance and telling everyone they have to wear a face covering, even if it’s not an enclosed space. This is wrong – as they should be allowing you not to wear one as a reasonable adjustment under the Equality Act 2010.

Read More …

https://www.autism.org.uk/what-we-do/news/coronavirus-information-about-rules-on-face-coveri

Published on 07 September 2020

The coronavirus outbreak has affected everyone. But it’s left many autistic people and their families completely stranded. Our new report, supported by four other leading autism organisations, highlights the often disproportionate and devastating impact the mental health, wellbeing and education prospects of hundreds of thousands of autistic people and their families.Read our report

Together with Ambitious about Autism, Autistica, Scottish Autism, and the Autism Alliance, we are calling on all governments in the UK to create an action plan to protect autistic people and their families from any future waves of the pandemic – and to address existing inequalities by investing in support and services.

Sign our open letter

Please sign our open letter to the Chancellor, Rishi Sunak MP, calling on him to invest in autistic people’s futures, ahead of the Spending Review this autumn.

We found that: 

• 9 in 10 autistic people worried about their mental health during lockdown; 85% said their anxiety levels got worse
• Autistic people were 7 times more likely to be chronically lonely than the general population*; and 6 times more likely to have low life satisfaction** (comparisons using ONS data)
• 1 in 5 family members responding to the survey had to reduce work due to caring responsibilities
• 7 in 10 parents say their child has had difficulty understanding or completing school work and around half said their child’s academic progress was suffering.

Thank you to the 4,232 autistic people and families in the UK who responded to our survey during June and July. Your responses show that coronavirus and the lockdown deepened existing entrenched inequalities. The disruption, uncertainty and pace of change triggered huge levels of anxiety and for some was made worse by the withdrawal of support from social care, education and mental health services.

The Government’s Coronavirus Act temporarily weakened many of the duties on councils to provide support. But even before these powers were created, or in areas where they never came into force, we heard of people losing their mental health, education and social care support services – sometimes with little notice. On top of this, many autistic people reported having huge difficulties shopping for food. The new rules about going into shops alone (without support), new layouts and the rules on masks left many feeling overwhelmed and, in some cases, like they couldn’t go out at all.

While these concerns led to anxiety for most autistic people, the impact was felt most strongly by those with higher support needs, autistic women and non-binary people. This research was led by the National Autistic Society, as part of a project funded by the Pears Foundation, with a number of other autism charities supporting.

Continue Reading …

https://www.autism.org.uk/what-we-do/news/coronavirus-report

Published on 24 September 2020

The Welsh Government has launched a new consultation on its Code of Practice on the Delivery of Autism Services. The Code aims to set out what is legally required of services provided by local authorities, health boards and other public bodies in relation to the support they offer autistic people and their families in Wales. 

This follows our Left Stranded report, highlighting the experiences of autistic people and families during the coronavirus pandemic and calling on the Welsh Government to issue this Code and make improving services and support for autistic people a priority. 

Read the Code

The four main chapters in the Code outline: 

• arrangements for autism assessment and diagnosis
• arrangements for accessing health and social care services
• arrangements for awareness raising and training on autism
• arrangements for planning and monitoring services and stakeholder engagement

The Code of Practice on the Delivery of Autism Services responds to our calls for clear, legally-binding duties on public services to provide support and improve the services available. And whilst we remain disappointed that a proposed an Autism Act for Wales was rejected by the Senedd last year, we are optimistic that the Code offers the potential to meaningfully strengthen the rights of autistic people and their families in Wales.

Our charity, alongside autistic people and families, will be looking closely at the Code and suggesting ways to further improve and strengthen it, and to ensure everyone has their say.

We will provide regular updates on how to get involved in the consultation, so be sure to follow us on Twitter, like our Facebook page, and sign up for email updates. 

Source:

https://www.autism.org.uk/what-we-do/news/welsh-government-autism-code-of-practice