2022 is the 60th anniversary of World Autism Acceptance Week by the National Autistic Society. An estimated 700,000 people in the United Kingdom have a diagnosis of autism spectrum disorder. A further one in 100 children has been diagnosed with autism.
The week aims to raise awareness and funds for autism, creating better national understanding, and funding to deal with associated difficulties. Autism is a developmental disability that affects how a person communicates and interacts with the world. It is not an illness or a disease but instead means that a person's brain works differently.
Autism is considered a spectrum disorder because the severity of symptoms that people experience varies widely. Some of the symptoms that people with autism may experience include:
- Struggling to communicate effectively and interact in social situations
- Repetitive and restrictive behaviours - such as strict routines and dietary habits
- Increased or decreased sensitivity to light, taste, sound, or touch
- Intense focus on hobbies or interests
- Extreme anxiety
- Temporary losses of behavioural control (meltdowns and shutdowns)
While being autistic does not stop someone from living a rich and full life, it's also true that autistic adults and parents of autistic children may experience challenges in daily life. Unbeknownst to some people financial help and support can be granted to people on the autism spectrum. This stretches beyond disability benefits as a range of other benefits are available.
It is not only those who are diagnosed with autism that face challenges. Parents and legal guardians also face difficulties as financial and emotional caregivers. If you have a child who is under sixteen and on the autistic spectrum, you could be entitled to financial help.
Parents may be able to claim Disability Living Allowance (DLA) from the government on behalf of their autistic child if they have additional care needs or experience difficulty when walking. However, not everyone is eligible and a parent will need to apply to the Department for Work and Pensions to see if they meet the criteria. Also DLA is being phased out and replaced by the Personal Independence Payment (more on that later).
In general, DLA is open to children who have difficulty walking or have additional care needs. DLA is awarded in reflection of the severity of the disability. The assessment is non-means-tested, so income and savings do not affect the claim.
Additionally, a parent may be able to claim a Carer's Allowance if their child meets the criteria for the Disability Living Allowance (DLA). Carers who look after a child who has received DLA at the mid to high rate can claim this benefit. However, this benefit is income assessed. In order to be eligible, the parent must not earn more than £128 per week and they have to be caring for a minimum of 35 hours per week.
What does the switch to universal credit mean?
Universal credit has amalgamated a number of benefits into one including:
- Child tax credit
- Working tax credit
- Housing benefit
- Income support allowance
The standard allowances of Universal credit is as follows
|Your circumstances||Monthly standard allowance|
|Single and under 25||£257.33|
|Single and 25 or over||£324.84|
|In a couple and you’re both under 25||£403.93 (for you both)|
|In a couple and either of you are 25 or over||£509.91 (for you both)|
Universal credit is further topped up for those with children, depending on how many kids the parent has. For example, you get extra funding for each child, if there are one or two children. However, if you have three or more you may only receive benefits for two. If the child was born before April 2017, or if a person has been claiming for three or more children, before 6 April 2017 they are still entitled to the extra benefit.
Furthermore, no matter how many children you have as a parent, if they are disabled such as having severe autism they will receive this extra benefit. Also if you care for a severely disabled child you are entitled to an extra £163.73 a month.
Under Universal Credit, an adult can apply for help with housing costs - formerly housing benefits. This largely depends on age and circumstances and can help pay for rent. Homeowners struggling to pay a mortgage may also be able to get loans or help to pay off interest installments.
What disability benefits can autistic adults get?
For adults 16 to 65 the Disability Living Allowance has changed to Personal Independence Payment. Adults over the age of 16 are entitled to these disability benefits. But, what is The Personal Independence Payment? Here are a few key takeaways:
- It is a disability payment for adults
- Includes an unrestricted cash payment
- People are eligible even if they are working or in education
- Also can be used in conjecture with other benefits such as Universal Credit
- They are not means-tested benefits - Income and savings do not affect if you qualify or not
- If you have made a PIP claim before reaching the pension age, you still qualify after the state pension age
As of February 2019 68,847 adults who are on the autism spectrum were receiving PIP payments.
What is the criteria and assessment for PIP?
As was normal for the former DLA, PIP disability benefits are assessed largely in two parts. These are daily living and mobility in which someone can qualify for one or both. However, PIP also has different qualifiers. This includes:
- A face to face assessment with medical professionals
- You have had the condition for at least three months before payments start and the disability is likely to continue for at least nine months
- PIP awards are given for fixed periods rather than indefinitely
- A new PIP claim can be made when the period ends
Daily Living Criteria. How well you can handle certain aspects of daily living as an adult with autism defines how much you are eligible for. Daily living difficulties include:
- Preparing food. Can the person cook for themselves and reasonably feed themselves without difficulty and without causing danger?
- Can the person manage their health condition without supervision? For example, can they self-manage medication and attend therapy by themselves?
- Is the person able to wash and bathe themselves or do they need help or supervision?
- Do they suffer from incontinence or do they need help using the toilet?
- Can they dress without supervision?
- Are they able to communicate verbally?
- Do they need help reading or interpreting signage?
- Are they able to effectively engage with other people?
- Are they able to look after money and budget for themselves?
Mobility is another way that disability is measured. As you would expect this includes a person's physical ability to move or walk around. However, this also includes the ability to plan and follow a journey without assistance which some people with autism can struggle with.
How can someone claim PIP?
You can apply for PIP disability benefit by a number of means. Firstly people living in Scotland, England, and Wales can phone the DWP on 0800 917 2222. Northern Ireland citizens should phone the Social Security Agency on 0800 012 1573. The person who phones must be the claimant, the appointee, or the prospective appointee.
Citizens of Scotland, England, and Wales can also claim using paper forms. This is called a PIP1 and the letter should be sent to:
Personal Independence Payment New Claims
Post Handling Site B
After an initial submission by phone or paper, a second form needs to be completed known as the PIP2. After this, a face-to-face consultation may be required.
People who care for adults who benefit from PIP may also be eligible for carers allowance. Furthermore, an enhanced mobility scheme has been put in place to help those with mobility issues. This allows people to lease affordable cars, wheelchair-accessible vehicles, scooters, or powered wheelchairs.
What is the access to work grant?
Access to work is a government initiative to help people with disabilities in the workplace. A grant may be awarded to provide to help pay for practical support in the workplace. Financial support can also be provided to help get communication support for job interviews. Finance can be provided for things like:
- BSL interpreters, lip speakers or note takers
- Vehicle customisations to help you get to work - wheelchair access for example
- Taxi expenses for the person with the disability or their support worker
- Money to pay for a support worker or work coach
Where can I find further information and support on Autism?
Outside of any social security benefits or disability benefits, help and support can be found in various ways. Firstly, provided they are reliable and capable, friends and family can be a great source of support, emotionally and financially.
Thankfully acceptance and understanding of autism have evolved greatly in recent years those living with autism are now supported by a number of charities.
National Autistic Society. This charity aims to increase awareness of autism and the difficulties associated with the disorder, as well as provide people with information. The society campaigns to improve work and educational conditions for people with autism. They also provide their own schools, and specialist services to help pupils with autism. They provide living support services, employment, training, and professional development opportunities. They also have diagnosis services and more.
Ambitious About Autism. This autism charity has several key aims to help benefit the lives of people with autism. Namely:
- Education - They run two specialist schools and an autism focused college
- Employment - They help people with autism gain employment, by training then, removing barriers to employment, connecting them with employers, and supporting organisations that employ staff with autism
- Policy and campaigns. The charity also aims to run campaigns to help society implement changes to make the UK more autism-friendly/accessible.
- Training and consultancy. Parents, professionals and organisations can all rely on this organisation for consultation and training about autism.
A directory of services for autism can be found on the National Autistic Society website.
Support at school and at work
If your child is on the autistic spectrum then there is also support in the education system. You can speak to your child's teacher or the special educational needs staff about extra support during lessons and exams.
For people managing autism at work, there are reasonable adjustments that your employer can make to help make your workplace autism-friendly. These could include a clear routine and schedule, moving your desk to a quieter or less bright part of the office, or regular breaks in a quiet space.
Where can I find autism support on social media?
Social media can be an excellent tool to help guide, and support families of children with autism, and people with an autism diagnosis.
Firstly Facebook has a number of useful links, including:
Twitter is also a handy platform to find advice and guidance. More information can be found using the following links:
Thankfully there are many avenues of support that people can turn to, including social security disability benefits. However, outside disability benefits, there are also organisations to turn to for advice and guidance. There is more work to be done, but hopefully, these efforts go some way to alleviate some of the difficulties associated with this disability.