Categories
Additional Needs and Disabilities Education Mental Health Uncategorized

Learners’ Single Point of Access (L-SPA)

What is the L-SPA?

The Learners’ Single Point of Access (L-SPA) offers help and support to children and young people within Surrey who have a problem, concern or needs about their development or progress. L-SPA offers help to anyone to the age of 25.

What the L-SPA does

L-SPA assures they will give children and young people the right support or intervention at the right time so they can help you meet your learning developmental milestones. The L-SPA provides you access to information and advice from a team of professionals from education, health and social care; aiming to answer your call within 20 seconds. The L-SPA will not replace any existing referrals to services for children. If you have existing support or help from another service, the L-SPA will support and help alongside.

How to access the L-SPA

The L-SPA is a phone service that runs from 9am to 5am, Monday to Sunday all year round except on bank holidays. You can call the L-SPA on 0300 200 1015. Alternatively, you can go to their website and fill out a form as a parent, practitioner or as a child or young person. If you are not accessing any learning services other then L-SPA, the L-SPA can help you to get support from another service.

Categories
Additional Needs and Disabilities Autism Dyslexia Dyspraxia Education Learning Difficulties Mental Health SEND Uncategorized

Additional Needs and Disabilities support at Colleges in Surrey

Introduction

ATLAS recently raised the below Action Card:

As young people with additional needs and disabilities, we would like more information on what study support is available in Surrey for all young people with additional needs and disabilities, so that we know what options are available to us when we make decisions about our education.

Support available

Following from your Action Card, we asked the Preparing For Adulthood Team at Surrey County Council what support colleges in Surrey offer. This is what we found out!

Nescot College

Nescot College offers a wide range of expert support, from specialised help with student finance to mentoring and professional counselling for personal, social or family problems.

All the services are free and available to anyone. To get this support you will be assessed at college after talking to your tutor.

When you join Nescot you can visit their website to apply for the support that applies to you. Or you can talk to your tutor or staff at Nescot and ask how to apply, or if they can help you apply.

For more information, visit their student services webpages:

https://nescot.ac.uk/about-nescot/student-services/send-information.html

Brooklands College

Brooklands College offers help from staff such as, progression mentor, your tutor, the counsellor, a member of the safeguarding team. They can also give you ways to help yourself or they can signpost you to services that can offer help and support. When you join the Brooklands college you can visit their website and see how to apply for the support that applies for you. Or you can talk to you tutor or staff at Brooklands and ask how to apply or if they can help you apply.

For more information, check on Brookland’s webpages on student support:

East Surrey College

East Surrey College offers additional support that’s offered to students who have a learning difficulty or disability. If you have a statement of additional needs, a learning difficulty assessment or an EHCP, you will need to provide any of these to get support from the college. The college provide access to assistive technology for exams, dyslexia and dyscalculia and will provide or recommend strategies to enable you to make independent progress in learning. The college has specialist staff to support those with hearing or visual impairments, as well as speech and language needs. Students needing more support will often be allocated a specific Learning Support Assistant to work with them ensuring consistency throughout the college day. There is also an Autistic Spectrum Support Group every 2 weeks, where students can socialise and try out new activities.

For more information, check on East Surrey colleges webpages on support for students:

https://www.esc.ac.uk/support-for-students

Farnborough College of Technology

Farnborough College has dedicated additional learning support such as, learning support workers, specialist tutors and key workers. Staff at the college work to create a range of support programmes for specific learning difficulties including dyslexia, dyspraxia, and dyscalculia. The support offer can provide 1-1 support, study and assignment workshops, exam access arrangements and assistive technology and equipment support. The college also helps with language and communication needs, whether its producing speech, understanding and using language or having specific communication difficulties.

For more information, check on Farnborough’s webpages on additional learning support:

SEND Local Offer

The SEND local offer aims to bring together useful information between education, health and social care within their website. You can find information, advice, guidance and a range of local service’s who provide children and young people with Special Educational Needs and Disabilities (SEND).

For more information, check on SEND Local Offer webpages on the support they offer:

https://www.surreylocaloffer.org.uk/kb5/surrey/localoffer/home.page

Categories
Additional Needs and Disabilities Anxiety Health Mental Health Self-Care Social

Tips and Tricks: Supporting Mental Health and Emotional Wellbeing with Additional Needs and Disabilities

Introduction

We found sharing their self-care tips and tricks with each other really helpful, especially during Covid. ATLAS members have found that during the pandemic it has been even more important to think about how you are spending our time, as we’ve not been able to do our everyday ‘normal’ stuff, like socialising.

We hope that others may find our thoughts and discussions around maintaining your mental health and wellbeing will be helpful to others.

The Importance of Self-Care

It has and continues to be important that you keep yourself active (however YOU define active), your mind active, and do things that you enjoy whilst staying safe. This can include any hobbies that you have like reading, drawing, listening, making music, going out for a walk: anything at all that you think will help you.

It is also important to make sure that you are eating and drinking enough water every day as that has a massive benefit to improving your mental health and wellbeing.

Tips and Tricks

We’re all different for what we find helpful. Here are some of the activities ATLAS members use for self-care:

  • Keep in touch with your friends because you don’t do much [during a pandemic].
  • Call someone everyday – video call not just phone call or texting. Because if I don’t socialise for a while, I will forget how to socialise.
  • Meditation and listening to music.
  • Click and collect libraries.
  • Making time for your hobbies
  • Weighted blankets help a lot. Weight toys, weighted lap pad and weighted jacket.
  • Baths and Showering.
  • I have been trying to explore working with my senses. A lot of time with myself, music really helps because it is hard not hearing people’s voices. Without sound I will get tinnitus or hallucinate.
  • White noises are also really good, especially with Autism I find big changes in volume different, so having noise all the time helps when people call me.
  • Keeping bin by the bed.
  • Using a bed desk if you can’t get out of bed so you are changing your work environment and home environment.
  • I try and make sure I have a main event every day. I think it is an ADHD thing – I can’t do something when I am waiting for something planned.
  • Routines!

Routines

ATLAS members find that routines help to structure out our day-to-day life and activities. Here are some of the areas we use routines to help us with:

  • Eat healthy meals.
  • Meal plans.
  • Have a timetable.
  • Have a sleep routine.
  • Similar sleep / wake up times.
  • Light exercise.
  • Having alarms / reminders.
  • Post-it notes.
  • Put reminders on phone.
  • Write in a diary.
  • Try and have different places in the house for different activities.
  • Everyday, do something that you enjoy.
  • Have structure in school / work.
  • Have a time in the day where you step away from screens.
  • Make exercise fun – put on music and dance or play a game that includes exercise like a virtual reality game (e.g. Wii Fit).
  • Writing plans.
  • Listen to music.

We find that routines are really helpful; they give us the information on what we want or need to be doing and when, as well as helping us to manage our time.

Importantly, routines help us to be more independent, reduce anxiety, and some of us have found it has also helped us build more confidence in ourselves!

Self-Care During Self-Care!

When developing routines, we feel it is important that you:

  • Don’t pressure yourself.
  • Take little breaks.
  • Tell people close to you what you need, or how you feel.

Do you have any tips and tricks you would like to share? Please comment below!

Categories
Additional Needs and Disabilities Anxiety Autism Health Learning Difficulties Mental Health Neurodiversity Personal Story SEND Sensory Processing Disorder

My Anxiety, ASD, and Me

What is Anxiety?

Anxiety makes you more anxious and nervous. It is harder for you to talk about your feelings and emotions. Sometimes it is hard to talk about your thoughts and what you are thinking about.

When you’re anxious it is really hard to talk to people because you don’t know who to trust. With anxiety, I find it really hard to trust people.

Things that cause me anxiety

There are a lot of things that cause me anxiety. For example:

  • Meeting new people and seeing a new place.
  • Emergency services
    • Because hospitals and the emergency services are scary.
  • Emergency vehicles
    • For example, police, ambulance, fire engine, flashing lights.
  • Loud noises, alarms, vehicles, fireworks, thunder, heavy rain, wind, screaming and shouting.
  • Professionals knowing about my life and personal information and not knowing who will be told & who they may tell.
  • Changes.
    • Cancelling or changing appointments with little notice or no notice.
    • Changing schools.
      • Different primary and secondary school.
    • too many changes happening at once.
    • home schooling.
    • Moving to college and having to make new friends.
  • Negative things on social media.
  • The news.
    • particularly about covid.
  • Covid in general because you can’t see people and places.
  • The Dark.
    • I can’t see what is happening around me.
    • I can’t see what people are doing.
  • Fights and arguments because you don’t know what’s happening.
  • Small tight spaces: I feel stuck and scared.
  • People that are hurt or sad.
    • Sad knowing that my friends have anxiety and bad mental health.
    • My friends seeing me struggling.
  • Being adopted.
    • Not understanding the whole process.
    • Not meeting family members that I don’t know.
  • Scary times from the past: being threatened to be kidnapped as a kid.
  • Being touched
    • You don’t know if they’re going to hurt you or not.
  • Intrusive thoughts.
    • They can be hard to ignore.
  • Not understanding what my disabilities mean: Autistic Spectrum Disorder (ASD), Learning Difficulties, Sensory Processing Disorder (SPD), Anxiety, Sensory Issues.
    • Because I have SPD it takes me more time to process and understand information.
    • My meltdowns and shut-downs.
    • Sometimes I am non-verbal.

Managing anxiety

There are many coping strategies you can use to help with anxiety. I prefer some strategies to others. Ones that I like are:

  • Hugs (: This is a big one!
    • Hugs are great because they’re very soothing and relaxing.
    • I like the feeling of touch; it calms me down quite quickly.
    • I mainly like hugs from White Lodge staff.
  • Fidget Toys. Ones that I like include:
    • Stretchy bands.
      • When you stretch the bands, they help to relieve frustration.
    • Chew toys.
      • They help relieve the anger inside my mouth.
  • Exercise.
    • Walking and yoga.
      • Walking is really calming, and yoga really soothes you and makes you want to go to sleep.
    • The fresh air makes you happy.
  • Talking to people who I trust.
    • For example, staff at White Lodge.
  • Soft toys.
    • They’re nice to cuddle.
  • Adrenaline rush.
    • For example, from a roller coaster!
  • Baths.
    • You can have a bath bomb and a candle in there, put some classical music on, it’s really nice!
    • Washing products that smell really nice also make you smell great and clean.
  • Colouring-in.
    • Colouring in between the lines makes you feel really relaxed.
  • Cooking.
    • Mixing ingredients, for example, is very calming.
  • Animals.
    • My dog really helps me! And my fish!
  • Make-up or face paint
    • I find putting these on a really nice sensory experience.
    • It is also very creative and a good way to express yourself.
  • Medication
    • I have a chewing gum with hemp in it that really helps me.
    • Lozenges and calming sweets can also be good.
  • Crying.
    • When I am in a shut-down, I find crying helps me feel better.
  • Going to a library.
    • It is quiet and peaceful. It is nice to go in.
    • Looking through the books, choosing one and then reading is a good way to distract yourself.
    • When I am in a bad mood, but not in a meltdown, I often ask to go to the library.

When you are anxious it can be hard to make decisions. So, it can also be difficult to use coping strategies when you are anxious because you don’t know which one to use and which one will help you the most. Sometimes when you are anxious you can also forget about the strategies!

Using coping strategies

I find it easier to use coping strategies when I have a meltdown when people tell me to use them. But when I have a shutdown, I find it difficult. When I need to use my coping strategies, I remember them by:

  • Using lists.
    • I have two: an outdoor and an indoor one.
  • My mum, or the people around me, remind me.

When I am having a shutdown I like it when people check-in with me and ask what they can do to help me. I find that helpful. It is helpful when people try and ask what is wrong. When I am having a shut-down I find people giving me hugs helpful, but please ask me permission before you do!

  • I would like it if the professionals that work me had a better understanding of shutdowns and what I need when it happens.

If emergency services have to work with me when I am anxious, having a meltdown or a shutdown, I would like them to:

  • Not talk over each other.
    • It’s hard to understand what they are all saying.
  • Not ask so many questions.
    • They try to rush you to answer.
  • To communicate using sign language (BSL/Makaton) or flash/single cards.
    • When I am in a shutdown I find it easier to use a different way of communicating.
  • Understand that they are not someone that I trust to share my personal feelings with.
    • I know that they are not all trained medical professionals, for example the police.
  • Use less force and be more gentle if they need to touch me.
    • Give me more warning if they need to touch me, for example use a countdown.
  • Not make threats to try and make me do things.
Categories
Celebrities Inspirational People Mental Health SEND

From genies to presidents: Robin Williams

“I want to help people be less afraid”

A wish written by Robin Williams in his Twelve Step book

Actor and comedian Robin McLaurin Williams was born on July 21, 1951, in Chicago, Illinois. When he was 16, his father retired from his job as a car salesman, and the family moved to the San Francisco area. Robin attended Claremont Men’s College and College of Marin before getting a scholarship to study at the Juilliard School in New York City. There he befriended and became roommates with fellow actor Christopher Reeve. Robin later tried stand-up comedy in San Francisco and Los Angeles, developing a successful act. Williams eventually moved back to California, where he began appearing in comedy clubs in the early 1970s.

By the mid-1970s Williams was guest starring on several television shows. After guest appearances as the alien Mork on Happy Days, he was given his own show, Mork & Mindy (1978–82). The series offered Robin the opportunity to transfer the passion of his stand-up performances to the small screen and provided an outlet for his many comedic talents. Mork & Mindy proved a big success and was key in launching Williams’s film career.

A string of successful film roles for Williams followed over the years, showcasing his stellar comedic talents as well as his ability to take on serious work. His first major role came with Good Morning, Vietnam (1987), in which he portrayed the irreverent military disc jockey Adrian Cronauer. The role earned Williams his first Academy Award nomination.

In the early 1990s he lent his talents to a number of successful family-oriented films, including Mrs. Doubtfire (1993), in which he played a divorced man who impersonates a female nanny in order to be close to his children, and the animated feature Aladdin (1992), in which he voiced the forever famous genie. He later portrayed Teddy Roosevelt in the comedy Night at the Museum (2006) and two sequels (2009, 2014). He provided voices for the animated films Happy Feet (2006) and Happy Feet Two (2011). Williams was side-lined with heart problems in early 2009, but he returned to work shortly thereafter.

A composite image of three different pictures of Robin Williams in a row. On the left, Robin Williams is shown in his Mrs. Doubtfire costume: an old white lady with grey hair pulled up into a bun, wearing large circular glasses, a white shirt and blue and white cardigan. She is holding a feather duster. In the middle Image, Robin Williams is shown back to back with his character from the animated movie Aladdin. The genie is blue, with pointy ears and a thin black beard and think black eye brows. On the right, Robin Williams is shown in his costume from Night at the Museum. He is dressed in a United States Veterans uniform, with a moustache and small circular glasses.

On August 11, 2014, the 63-year-old comedian had passed away in his California home. His publicist released this statement:

“Robin Williams passed away this morning. He has been battling severe depression of late. This is a tragic and sudden loss. The family respectfully asks for their privacy as they grieve during this very difficult time.”

In a statement issued by his wife on August 13, she had said that her Robin had been diagnosed with Parkinson’s disease which he had not disclosed publicly. Parkinson’s disease is a disorder of the nervous system that progresses over time, affecting movement and speech. She also confirmed that the actor was battling depression and anxiety. Robin’s wife statement also expressed gratitude for the outpouring of support following her husband’s suicide and touched on the legacy he left behind:

“Since his passing, all of us who loved Robin have found some solace in the tremendous outpouring of affection and admiration for him from the millions of people whose lives he touched. His greatest legacy, besides his three children, is the joy and happiness he offered to others, particularly to those fighting personal battles.”

In November 2014, reports surfaced that prior to his death Williams was also suffering from Lewy body dementia, a type of progressive dementia often found in people diagnosed with Parkinson’s disease. In December of that year, Night at the Museum: Secret of the Tomb, the final film in the series, was released in which Williams reprised his role as Roosevelt.

Years after his death, Williams’s show business career and final days remained a captivating subject for fans. Dave Itzkoff’s Robin became a best-seller following its May 2018 publication, and two months later, HBO offered a character study of the comedian via footage of stand-up clips and interviews with family and friends in Robin Williams: Come Inside My Mind.

Robin Williams looking up he's wearing a black t-shirt and has a gold chain necklace around his neck. The background is black. Quote reads; No matter what people tell you, words and ideas can change the world. -Robin Williams

If you, or someone you know, is struggling with mental health difficulties and/or suicidal intent or ideation, the following organisations may be able to help:

Categories
Bullying Care Education Mental Health Personal Story

The Importance of Alternative Learning Provision

This personal account was written by a young person and they have shared it with the User Voice and Participation Team. This young person wishes to remain anonymous.

“Mainstream education was difficult for me because of the bullying I received from other students. Before other students found out my mum had a disability I was like any other person in the school, I had lots of friends in and out of school, but this all changed overnight. There was a boy in my class who was known for bullying students, I really don’t know how he found out about my mum’s disability but he started to walk past me and pretend he was on crutches, other people then started to do the same. 

I would go into school, have form time and then walk to lesson, every time there would be a group of young people pretending to walk on crutches and laughing to each other. This then progressed to them finding out my father had died, they then started to make fun of this. I tried to deal with it by taking it as a joke, hoping they would stop, but I could not take anymore by Christmas. I spoke to my head of house about it and I felt it was not taken seriously. This response had a detrimental effect on my mental health, and I started to make up excuses not to go to school, the school would send work home for me to complete, which I was doing (Year 8).

At the beginning of Year 9 my mum and myself were asked to go to a meeting at school, we were told the main instigator of the bullying had moved to the other side of the year and the rest of his group had been expelled. I agreed to go back to school however because of my trauma, I now found it hard to be around lots of people, so I was put in isolation. This was the worst thing that could have happened because the bully then ended up in the same classroom as me.

My anxiety then went through the roof and I then refused to return to school. I felt the school were not very understanding of my issues and threatened to arrest my mum for letting me stay home.

The school did not send any work back home to me as I was not de-rolled and my mum was still being threatened. This added a lot of anxiety to what I was already feeling, in Year 9 I still managed to get out over the weekend, but this stopped quickly by Christmas as I was beaten up by the bully and his group of friends in town.

I then stopped going out for a year and a half. I was struggling with my mental health and I was referred to CAMHS.

At the beginning of Year 11 the school contacted my mum and suggested that I went to Access to Education (A2E), I was anxious about this as I had not seen anyone for a number of months.

A2E came over to my house to meet me, I was nervous, but they started a conversation about football and that put me at ease. They explained I would only be with one other person and this gave me the courage to give it a go. They eased me by letting me do the first week’s lessons online. The following week I was picked up by one of the workers and taken to the centre, she kept me calm by talking about football.

A2E supported me in that when I was having a bad day, I could do my lessons online at home and this helped a lot. A2E was more informal than school, I was allowed to call the teachers by their first name which made a difference. They mixed the day up with lessons and then we had a fun activity. There was no PE which I feel could have benefitted me but in general I felt safe and was able to learn without feeling anxious.

A positive experience was when I attended A2E another young person from my school came to the centre and he had the same experience with the same people. We supported one another through our time there and it confirmed my experience at school was unmanageable, it also began to help with my recovery.

If I could add anything to A2E I would want to include physical activities where possible. What made A2E the ideal alternative provision was the attitude of the workers involved. Their approach made A2E the best provision for me at the time, I cannot think of anything else other than to include PE, that could have made my experience better. Overall, I think there should be more alternative learning provisions like A2E for young people as there are a lot of young people struggling with mainstream education.”

Categories
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).

Introduction

Recently I have been facilitating some of the virtual group meetings with the ATLAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.

Overall, it is felt and experienced that stigma and bullying are still prevalent. ATLAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.

One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.

What is stigma?

In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.

In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.

Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.

Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.

Bullying

People “make fun of disability in my school.”

There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, ATLAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”

Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.

An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.

“I don’t want to be made out to be ‘special’ because I have needs.”

Our role in ableism

What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis

An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.

The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.

“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”

People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.

“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”

I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.

Self-description

The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”

When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.

In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).

You can find out more about Lizzie on her Youtube channel.

The power of participation

The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.

This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.

“ATLAS has helped me build friends but not just in ATLAS, outside too, as it has given me confidence.”

Previously, ATLAS was called SYAS (SEND Youth Advisors Surrey). Members worked to rename and rebrand the participation group so that it aligns more closely with how they self-describe.

As a group, not only will ATLAS be redefining itself, but the young people will also be creating a report of preferred terminology, due in the summer.

“My disability is fluid.”

Due to recognition of the fact that people identify with different words in different ways, ATLAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).

“I would rather say I have additional needs than say that I’m disabled.”

“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”

Watch this space for more news about ATLAS and how their participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:

“Honestly a lot of time it’s about asking. It is about how someone self-describes.”

Categories
Mental Health Personal Story SEND

Comorbid Mental Health with Additional Needs and Disabilities

Rowan Foster, one of our ATLAS members, shares her knowledge and experience of comorbid mental health with additional needs and disabilities.

Contents

  1. Introduction
  2. Misdiagnosis
  3. The accessibility of treatment
  4. Chronic physical illness and mental health
  5. Lack of services
  6. Conclusion

Introduction

When someone has additional needs and disabilities, the way they experience the world and consequently the way they experience mental health can be very different, because their brain is wired completely differently – especially in autism. The challenges faced by someone with additional needs and disabilities, living in a world that is not built for them and often works against them, can lead to mental health issues, and in addition to this many mental health conditions are highly comorbid in people with additional needs and disabilities: for example, a study found that seven out of ten people with autism also have a condition like anxiety, depression, or OCD.

In this blog post, I will discuss some of the key issues that young people with comorbid mental health and additional needs and disabilities needs often face.

Misdiagnosis

The way that mental health difficulties can present in young people with additional needs and disabilities needs is highly varied and complex – and as a result, they can be harder to treat. Until you can acknowledge, understand, and meet the needs that a young person with additional needs and disabilities has, it’s tricky to diagnose, understand and treat their mental health difficulties.

Sadly, this isn’t always recognised, and a common result of that is misdiagnosis. Especially when a young person presents with mental health difficulties that need urgent treatment, professionals don’t always have the time or the training to properly take additional needs and disabilities into consideration. But the right diagnosis is crucial to the treatment of any mental health difficulty, because a diagnosis helps a professional decide what treatment needs to be given. Giving the wrong treatment is unproductive at best, and seriously harmful at worst.

For example, some of the misdiagnoses that are given to young people with neurodivergent needs are:

It is important to remember that someone with additional needs and disabilities can still have these mental health difficulties. However, the interaction between a young person’s additional needs and disabilities and their mental health difficulties means that a diagnosis should be made more carefully. To make sure that the right diagnosis is made, there should be professionals involved who are knowledgeable about additional needs and disabilities and how the young person’s additional needs and disabilities affect them must be considered.

A mental health professional I had in the past told me that neurodivergent needs are like a ‘neurological backdrop’ to any mental health problems that show up. It’s like painting on blue vs. red paper. You can put the same paint on the paper, in the same way, but the colour will show up differently.

Professionals can misread the severity of a mental health difficulty because the presentation in a young person with additional needs and disabilities is different to what they expect. With neurodivergent needs in particular, interpreting behaviours and reactions from a purely mental health perspective can lead to misdiagnosis. For example, an autistic meltdown could be misread as a severe mental health crisis, even though it could in fact be relatively easy to manage. If nobody in that young person’s care understands how to do so, they are left untreated.

The accessibility of treatment

Even when a young person is diagnosed correctly, treatments often have different effects on someone with additional needs and disabilities. For example, I have heard repeatedly that many young people with autism struggle with CBT, myself included. This is a therapy that the NHS prescribes for a lot of different mental health difficulties. Nonetheless, the very design of CBT means that it is not suitable for everyone. The best therapeutic approaches are individualised and this is especially true for people with neurodivergent needs.

Many therapeutic settings are not accessible to a young person with additional needs and disabilities, through practical accessibility in some cases and sensory difficulties in others. So even if you manage to get the young person treatment that will work for them, you need to make sure this is treatment they can access. What isn’t always understood about accessibility is that a place isn’t fully accessible if it causes undue stress or difficulty to access it. Even if you cannot see any issues with a young person getting to, from and inside a therapeutic setting, that doesn’t mean they aren’t there.

As a person with limited mobility, for example, there are lots of very small things that impact the accessibility of a place – most of which I never would have even thought of when I had full mobility: heavy doors, small steps, the material a path is made from. When the energy and pain it might take for me to get there and back is considered alongside the design of the environment, the recovery time required after an appointment can negatively impact my everyday life.

It is the multitude of small battles that can hurt the most. This is the same for all types of accessibility need. Consider a young person who is anxious about attending a therapeutic setting on top of having to worry about the accessibility of the building they must enter to access support. It is just another stress that they don’t need, and that could exacerbate their existing additional needs and disabilities and/or mental health difficulties.

Imagine that you have been placed somewhere that is supposed to protect you, however it is uncomfortable and possibly painful for you to be there. You are unable to remove yourself from this situation. How do you feel?

Inpatient facilities are often not accessible as they tend to be bright and/or loud spaces with very little privacy: a sensory nightmare. If a young person is there under a section, they cannot leave. Someone in an inpatient facility for their mental health would have been struggling before they arrived. They shouldn’t have to deal with inaccessibility on top of that.

Physical chronic illness/disability and mental health

It is also worth noting that if a young person has physical difficulties like chronic illnesses or disabilities, the relationship between this and comorbid mental health is often not explored in the right way. Young people are often not believed about symptoms like chronic pain – it is assumed that you’re ‘too young’ or exaggerating to get out of doing something. I’ve heard it said before that everything would be better if mental health was treated like physical health, but I’m of the opinion that this isn’t true. Regardless of if your health issues are physical or mental, if someone can’t see it, they often assume it doesn’t exist.

It can be very difficult to access medical treatment or be believed about physical symptoms if you have mental health difficulties, because medical practitioners will often assume that these are the cause. The early symptoms of my physical chronic illnesses were not recognized or addressed by paediatric health services, because they assumed that they were caused by my mental health issues. If they’d been recognized earlier, that could have prevented or at least mitigated the later decline in my physical health.

I have heard of many cases where people are prescribed psychological therapy in the expectation that this will eliminate a lot of their chronic illness symptoms. Therapy can be beneficial for long-term symptom management as it can help you learn to accept and manage your condition however, it is not a cure and shouldn’t be administered as such.

The stress of dealing with physical chronic illness and disability can cause mental health difficulties by itself, especially in cases where pain is involved. It can be so scary for a young person to have to take responsibility for their own body in that way, and it doesn’t help your self esteem when you can’t participate in the same things that your peers do. If your physical illness or disability sets in later in life, then you might also be grieving for the loss of a healthy body.

Young people with physical chronic illnesses and disabilities need empathy and support – and young people need to be believed and listened to.

Lack of services

There is no service or provision for a young person with SEND needs and mental health issues. Unfortunately, this means that nobody knows what to do when a young person needs support for both simultaneously, and nobody knows who is responsible for them. Young people with these more complex needs often find themselves jumping from service to service. The way that the services are built now means that a young person often finds themselves receiving treatment or support from a multitude of teams – none of whom speak to each other. It is usually left up to the young person and their parents or carers to coordinate their own care.

A holistic approach is key to treatment of many mental health conditions, which the current services fail to do. Mental health services do not understand the additional needs and disabilities, and the additional needs and disabilities either don’t have a service (because almost all additional needs and disabilities services are built for young people with moderate to severe visible + physical disabilities or learning difficulties with lower cognitive functioning) or their service doesn’t fully understand the mental health needs, especially when complex. These services can provide some help, but none of them can fully meet that young person’s needs. The fact that they do not talk to each other compounds the issue. The young person is left with a disorganised, often ineffective, treatment path, and it is difficult for them to know what is happening.

Conclusion

I think we need more integrated and holistic care options to provide for the needs of young people with additional needs and disabilities. We face enough discrimination from the world around us. It is disappointing that we sometimes also face this discrimination from the services that are supposed to help us. I believe that we can do better than that. We must.

I hope this post has been a valuable read for you. Maybe you related to parts of it, or maybe you’ve learnt something new. Even more so, I hope that you remember to treat the young people with additional needs and disabilities in your life with compassion and respect. Especially if that person is you.

ATLAS members chose to self-describe with additional needs and disabilities and therefore this article has been updated to replace SEND with additional needs and disabilities.


Resources

[1]https://www.autismresearchtrust.org/news/borderline-personality-disorder-or-autism

[2]https://pro.psychcentral.com/aspergers-syndrome-vs-ocd-how-to-avoid-misdiagnosis/

[3]https://www.drakeinstitute.com/adhd-vs-anxiety-whats-the-difference

[4]https://socialanxietyinstitute.org/social-anxiety-and-aspergers-differences

[5]https://guilfordjournals.com/doi/abs/10.1521/adhd.2005.13.3.9?journalCode=adhd

[6]https://adhdnews.qbtech.com/odd-a-problem-of-misdiagnosis#

[7] https://network.autism.org.uk/good-practice/case-studies/eating-disorder-or-disordered-eating-eating-patterns-autism

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