Affirming Autism 

General Support and Resources

Contents

 

  1. Information about not getting an autism diagnosis
  2. Anxiety and depression resources
  3. Crisis and wellbeing support
  4. Asking for help
  5. Care Act Assessment
  6. Hidden Disabilities Schemes
  7. Managing better.
  8. Coping with Activities of Daily Living
  9. Budgeting
  10. Other Useful Resources
  11. Executive Functioning
  12. Managing energy levels
  13. Strategies and resources for ADHD


 

 

  1. Information following not getting an autism diagnosis

For some people, not receiving an autism diagnosis can be a difficult experience, one that may lead to feelings of upset, anger, disbelief, or confusion. This can happen if a person has felt sure that they are autistic and identify strongly as such, or if people in their life have told them that they are likely to be autistic. A person may have autistic friends and identify strongly with them. 

There are several reasons why a person may not be diagnosed as autistic. Right now, in the UK, we use the ICD-11 criteria to diagnose autism. This is a global standard for diagnostic health information. This sets out criteria a person must meet to receive a diagnosis (this is a list of characteristics that need to be present for us to say someone is autistic). 

Sometimes we are not able to get enough information about a person’s childhood to be sure that their differences were present during the developmental period. Alternatively, a person might meet some but not all the characteristics needed, in which case we cannot say that they’re autistic. The person may have clear autistic characteristics, that may cause them difficulties in their life, but not to a level that meets criteria for a diagnosis. 

We recognise that these difficulties are still valid and important, even if a person does not meet criteria for a diagnosis. Sometimes we think that there is an explanation of a person’s experiences or differences that fits better than autism. This can include other explanations such as ADHD, trauma, mental health conditions (including depression, anxiety, and OCD) or a person’s personality.

 

  1. Anxiety and depression resources

Depression:  

Feeling down, sad, or upset is normal. This becomes concerning when it lasts for prolonged periods of time such as for several days or weeks.  

 Anxiety:

Anxiety is a feeling of unease that can be mild or severe. Everyone has feelings of anxiety at certain points in their life however it can sometimes affect people’s daily lives as they have a constant feeling of anxiety and find it hard to control their worries.  

 

If you are experiencing one, or both of these there are some resources below to help mange those feelings.  

There are various apps you can download: 

 

 

 There are also various websites you can visit:  

  

Coping Strategies 

Try these when you're feeling anxious or stressed: 

  • Take a time-out. Practice yoga, listen to music, meditate, get a massage, or learn relaxation techniques. Stepping back from the problem helps clear your head. 
  • Eat well-balanced meals. Do not skip any meals. Do keep healthful, energy-boosting snacks on hand. 
  • Limit alcohol and caffeine, which can aggravate anxiety and trigger panic attacks. 
  • Get enough sleep. When stressed, your body needs additional sleep and rest. 
  • Exercise daily to help you feel good and maintain your health.  
  • Take deep breaths. Inhale and exhale slowly. 
  • Count to 10 slowly. Repeat, and count to 20 if necessary. 
  • Do your best. Instead of aiming for perfection, which isn't possible, be proud of however close you get. 
  • Accept that you cannot control everything. Put your stress in perspective: Is it really as bad as you think? 
  • Welcome humour. A good laugh goes a long way. 
  • Maintain a positive attitude. Make an effort to replace negative thoughts with positive ones. 
  • Get involved. Volunteer or find another way to be active in your community, which creates a support network and gives you a break from everyday stress. 
  • Learn what triggers your anxiety. Is it work, family, school, or something else you can identify? Write in a journal when you’re feeling stressed or anxious and look for a pattern. 
  • Talk to someone. Tell friends and family you’re feeling overwhelmed and let them know how they can help you. Talk to a physician or therapist for professional help. 
  • NO MORE suicide- Website offers clear and immediate support options to those who may be suffering with thoughts of suicide or people who know someone or may be struggling. It offers early intervention information. The website can also be helpful to those who have been bereaved by suicide. https://no-more.co.uk  
  • Supporting the victims of honor-based abuse and forced marriage-https://karmanirvana.org.uk/  
  • Samaritans- Call 116 123 or email jo@samaritans.org for a reply within 24 hours 
  • Call 111 if you need urgent help but it is not an emergency and 999 if someone’s life is at risk or you do not feel you can keep yourself or someone else safe  
  • Stay alive app – allows access to lots of support services and contact can be made by phone, text, live chat or online support. 

 

Talking Therapy and Psychological Therapy Providers  

 

National: 

 

Activity Based Groups 

 

If you are struggling to find local activities in your area, please contact your: 

  • GP practice to see who your local social prescriber is, who can then help you find and access activities. 
  • Community connector (page 6-7), who can help you connect with activities in your area. 

 

Nationally: 

 

  1. Crisis and wellbeing support:

 

 

  • Call 111 if you need urgent help but it is not an emergency and 999 if someone’s life is at risk or you do not feel you can keep yourself or someone else safe  

 

  • NO MORE suicide- Website offers clear and immediate support options to those who may be suffering with thoughts of suicide or people who know someone or may be struggling. It offers early intervention information. The website can also be helpful to those who have been bereaved by suicide. https://no-more.co.uk

 

  • Stay alive app – allows access to lots of support services and contact can be made by phone, text, live chat or online support. 

 

  • www.hubofhope.co.uk Mental health support network providing information on various support options via a postcode search.

 

 

Some of these apps enable you to text or email or live chat instead of having to speak on the phone, although this is also an option. 

 

IAPT - Psychological Therapies: 

In many areas you can refer yourself directly to a psychological therapies service or you can speak to your GP to ask about a referral. 

 

  1. Asking for help:
  2. Care Act Assessment

it is important that you can identify a strategy you can use to ask for help if you need it.  Sometimes it is hard to ask for help, but if you have a close friend or family member, or supporter, it is helpful to find a strategy you could use to ask for help in a different way. It could be that you don’t understand how you feel, just know that you don’t feel okay, so you should use your strategy at this point. It may be that you’ve had a bad day, or feel angry, or you need to talk, and the strategy could be used at this point. 

 

A strategy could be:

  • To send a text message, or email to someone.
  • To use an agreed code word. This could be said, text or written down. 
  • To use an agreed shared app where you can rate your mood. You can previously agree with the other person that if you press a certain mood button, you would like them to contact you; or if you change your mood status. 
  • To use an item to indicate that you would like some support or to talk. Ideas of this could be a fridge magnet that is placed on the fridge, or a fridge magnet that is two-way, and is turned a certain way.; Or alternatively an agreed item that you place in a specific place that is frequently passed and isn’t usually there. 
  • Or there may be another strategy you agree together. 

 

If you are having difficulties needing assistance as set out in care act eligibility criteria you are entitled to a Care Act assessment. This enables social services to see what support they can provide and may involve signposting to appropriate services.

 

Eligibility criteria for a care act assessment: 

  • Do the needs arise from a physical or mental impairment or illness?
  • Do these needs mean that the adult is unable to achieve two or more of the listed outcomes?

- Managing and maintaining nutrition

- Maintaining personal hygiene 

- Managing toilet needs

- Being appropriately clothed 

- Being able to make use of the adult’s home safely

- Maintaining a habitable home environment

- Developing and maintaining family or other personal relationships

- Accessing and engaging in work, training, education or volunteering

- Making use of necessary facilities or services in the local community, such as public                                                              transport, and recreational facilities or services

- Carrying out any caring responsibilities the adult has for a child

  • Is there consequently a significant impact on the adult’s wellbeing?

 

More information can be found at:

https://livingautism.com/autism-rights/ 

https://www.scie.org.uk/care-act-2014/assessment-and-eligibility/eligibility/outcomes 

 

If you consider someone to be your main carer, they are also entitled to a carers care act assessment if they are struggling in supporting you with activities of daily living and need further support in fulfilling this caring role.

 

Eligibility criteria for a care act assessment for a carer:

  • Do the needs arise because the carer is providing necessary care and support?
  • Is the carers physical or mental health affected or at any risk of deteriorating, or is the carer unable to achieve any of the listed outcomes?

- Carrying out any caring responsibilities the carer has for a child

- Providing care to other persons for whom the carer provides care

- Maintaining a habitable home environment in the carers home, whether or not this is also the home of the adult needing care 

- Managing and maintaining nutrition

- Developing and maintaining family or other personal relationships

- Engaging in work, training, education and volunteering

- Making use of necessary facilities or services in the local community, including recreational facilities or services

- Engaging in recreational activities 

  • Is there consequently a significant impact on the carer’s wellbeing?

 

Carers UK: Contact us | Carers UK 

 

  1. Hidden Disabilities Schemes 

 

Sunflower Lanyard 

The sunflower lanyard scheme is in operation in certain stores e.g., Tesco’s, Argos, Sainsbury’s, M&S, to support people who have a hidden disability. Free lanyards are available from customer services. 

There are also lots of other products available online such as a sunflower face mask, or a card. These can be personalised to share the details of your disability. There is also an interactive map where you can view stores in your area where the scheme is recognised. 

https://hiddendisabilitiesstore.com/?SID=f51fdd1a58370bde75217b2d2606fa64 

 

  1. Managing better.

 

Increasing your knowledge and skills allows you to feel more confident in self-management. 

 

The following YouTube channel has some pre-recorded workshops that can be used to support wellbeing. Some of the workshops that are available are Anxiety Management, Anger Management, Mindfulness etc. 

https://www.youtube.com/channel/UCajuamnlkr560vsUGSIT89Q 

 

  1. Coping with Activities of Daily Living

 

Cooking: if multitasking is a problem when cooking, some strategies are: 

 

 

 

If it is difficult to make choices in order to plan meals, here are some strategies that may help: 

  • Planning meals in a timetable can be helpful to avoid feeling overwhelmed. You could decide to shop weekly, devise a meal plan for that week, write a shopping list for your required items and then buy the items. Alternatively, you could plan a two weekly or four weekly rotating meal plans. It is possible to have shopping lists associated with each week, so you know what you buy regularly, and what you need to make those meals. 
  • Meal planning apps can be helpful as they will generate the shopping list you need for those specific meals for you. You can then delete anything you do not need.  
  • If you choose online shopping or click and collect, your favourites can appear in a list, and you can make a list of what you need each week, and then just add that to the trolley. 
  • Buying food daily, for what you need that day. 
  • Another way of making meal planning easier is to think what you had yesterday to write this down, and then make a note of what you are having today and write your choices down for the next seven days. Now you have a seven-day plan. Alternatively, if you are able to, you could think back what you have eaten for the last seven days, write these down, and then you have a seven-day plan. You can then make changes to any meals you don’t want to eat as frequently, and it will be easier to think of one meal, rather than seven. 
  • When you have designed a meal plan, you can write a shopping list based on the items you need for the meals between now and when you next go shopping.  In addition, it can be helpful to have a master list of items you regularly purchase, so you can write your shopping list from this, or generated on your computer and cross out anything you have.  

 

Shopping: if it is difficult to go into a shop, here are some strategies that may help: 

  • visiting the shop early in the morning or late at night, when it is quiet. Google can show information on when a shop is quieter.  
  • Using online shopping, click and collect or uber delivery schemes.  
  • Using a local milkman to deliver milk and produce such as eggs, cheese, bread etc. 
  • Using a local vegetable delivery scheme or local farm for these items. Sometimes eggs, cheese, meat products can also be obtained.  
  • Visiting a small local store.  

 

Making contact with organisations: 

Companies are introducing different ways that they can be contacted, which people find helpful to avoid the phone. For example, email, live chat, apps, and messaging facilities are all of benefit.

The NHS has an app, which you can register for and book appointments and order repeat prescriptions through. 

There are various online pharmacies, that if you regularly order medication on repeat prescription. The pharmacies have their own app which can remind you when your next request is due, which you order through the app, and will send the medication to you through the post. Echo and pharmacy 2U are two examples. 

 

  1. Budgeting

Several apps for budgeting are available. They use an ‘envelope’ approach to money management, so you set an envelope and an amount for things like food, travel, rent etc, and when you make a purchase, you go into the envelope within the app and deduct that amount. This only works if you are very strict at inputting the amounts into the app. It can be a helpful approach though as it helps you rationalise a purchase you want to make, as you  

must consider which envelope the purchase is going to come out of and whether you can afford it or not. Https://www.thebalance.com/best-budgeting-apps4159414  

CAP run a money management course at various venues throughout the UK. CAP stands for Christians against poverty, and they use an approach based on using the jars, quite like the envelope approachable, but a jar represents a part of money.  This has been shown to be quite effective approach.  

 if you are in debt, www.stepchange.org can help you manage this, and help you budget and manage your money going forwards. 

Other organisations that can help are: 

www.nationaldebtline.org  (National)  

www.pennysmart.org.uk  (Chester)  

 

Call 159 for fraud. 

People who suspect they have been victims of fraud can now call a new number - 159 - which aims to be a '999 for fraud'. 

The 159 number is being trialled by Stop Scams UK, a group of banks and telephone firms. If you call the hotline you can speak to your bank instantly about a suspected fraud. 

A Stop Scams UK statement said: "159 works in the same way as 101 for the police or 111 for the NHS. It’s the number you can trust to get you through to your bank, every time." 

Stop Scams UK said people who think they have been defrauded should "stop, hang up and call 159 to speak directly to your bank". 

The hotline will run for 12 months as a pilot scheme. 

Banks representing 70% of current account customers have already signed up. These are Barclays, Halifax, Bank of Scotland, NatWest, Royal Bank of Scotland, Ulster Bank, Starling Bank and Santander.  

 

Support with benefits and forms:

The Citizens advice bureau (CAB), or one stop shops, are able to help with form filling, if you need support with this. You have to contact your local service to book an appointment. 

 

Some CABs run a ‘help to claim’ scheme for people who wish to apply for benefits including PIP and will support you through the process.

 

  1. Other Useful Resources

Employment: 

IPS grow https://ipsgrow.org.uk/ which focusses on mental health service users getting into employment, so you have to be under mental health services or IAPT to access it.  

 

ADDvanced Solutions- offer a Community Network for children, young people and their families living with neurodevelopmental conditions, learning difficulties and associated mental health needs. They also offer a range of mentoring and some person-centred consultancy.

Welcome to ADDvanced Solutions

 

LBGTIQ+ support  

 

Resources for relationships:

Dating:

Affirming Autism cannot be held responsible for these websites or peoples experience, we are just providing information that we have heard about that we have been asked to provide to other people. 

Websites: 

 https://www.iidc.indiana.edu/irca/articles/tips-for-women-in-relationships.html - this is written for women whose partner is autistic, but the advice given is written in a generic way and is accessible.

 

  1. Executive Functioning

This is your ability to process information, remember things, sequence and complete tasks without getting distracted. Executive functioning also helps you to manage emotions, and behaviours.

 

Here are some resources on executive functioning and strategies:

https://www.ne-as.org.uk/executive-functioning 

https://other-autism.com/2020/12/19/executive-function-task-switch-autism/

https://www.purpleella.com/2017/11/02/autism-executive-functioning/ 

A tip -using different colours can make different tasks stand out! 

https://www.tiimoapp.com/ app is good for time / task management.

To help focus, or break intensive focus: https://todoist.com/productivity-methods/pomodoro-technique 

Magic ToDo - GoblinTools

 

  1. Managing energy levels

 

Some strategies to try:

 

  • Identify triggers- what makes it worse? Situations, demands, people? 
  • Make a list of your stressors so you can identify what to change. Do a “demand inventory” of your life and consider if there are any non-essential demands you can drop for a while. If you regularly cook, can you do more microwave foods, takeout, or meal delivery subscriptions for a while?
  • Recognise and gauge your feelings so you know when to take a break or practice self-care.
  • Set boundaries- see what can be put off til later, limit exposure to triggers, break things into smaller steps. (Mute notifications, reduce demands)
  • Take breaks, reduce the number of tasks on your to-do list.
  • Take time to unmask and be yourself- stim, spend time on your interests, be kind to yourself. Do things you like to do.
  • Finding movement that feels enjoyable, pleasurable, and restorative is vital. This may involve repetitive movement or movement that provides proprioceptive input (like swinging, weightlifting, or more).
  • Make a list of things that help and make you feel good you so you can remind yourself to do them.
  • Consider reducing/addressing sensory issues- earplugs, quiet time, breaks, make a sensory diet list.
  • Focus on improving your sleep. Make a relaxing bedtime routine, tell yourself your to-do list can wait until the morning, avoid caffeinated drinks before bed or large meals etc. Take more exercise.
  • Ask others for compassion or help. What can others do to help?
  • Ask for accommodations or adjustments at work. For e.g. Take some leave, ask for changed hours/ role. Ask for longer deadlines, avoid doing overtime, reduce your standards while you recover.

 

 

  1. Strategies and resources for ADHD:

 

 

 

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