Sheffield Autistic Society FAQs

In these pages we try to answer some of the questions which are frequently asked (FAQs) by people who contact the society. Please note we cannot guarantee the accuracy of all statements in this section. Wherever possible statements about services are taken from official sources and we do our best to check them.

Answers given refer to the situation as we understand it in Sheffield, United Kingdom and do not necessarily apply in other local authority areas or jurisdictions.

In some cases you may find the answer to your question, or more detailed information, by looking within the appropriate page or section of our website.

Adult Diagnosis

I think I may be autistic – should I go for a diagnosis?

Not everybody is diagnosed with autism as a child. In fact, many adults go through life without a formal diagnosis.

While not everybody wishes to seek a diagnosis, it can help to answer questions about your life experiences or explain why you might find some things more difficult than others.

A formal diagnosis may also unlock extra support, such as access to benefits or care services.

You may be interested to watch a talk introduced by Elizabeth Milne from Sheffield University. Two people talk about their own experience of being diagnosed with ASC in adulthood (Lynne Gill and Annie Ryan), and there is a closing talk by Dr Richard Smith from Sheffield Adult Autism and Neurodevelopmental Service (SAANS): https://www.youtube.com/watch?v=uHAfMyi5S1Y&feature=emb_logo

What can I do to get a diagnosis?

The first step is to have an appointment with your GP and explain why you want a diagnostic assessment. At the appointment, the GP may ask you about your developmental history, services you are involved with and why you think you may be autistic.

Not all GPs are experts on autism, so it is a good idea to present them with evidence about why you feel you are autistic.

They may then refer you to the Sheffield Adult Autism and Neurodevelopmental service which is based at Nether Edge Hospital, for a diagnostic assessment. Details about the service can be found here https://www.shsc.nhs.uk/services/sheffield-adult-autism-and-neurodevelopmental-service-saans

They have also published a guide on what to expect at the diagnostic appointment which you can download here:  What to expect from an assessment at the Sheffield Adult Autism and Neurodevelopmental Service

What if my GP will not refer me for a diagnosis?

You can ask to speak to someone else, like another GP – this is called getting a second opinion – and ask them to consider your request. It may be helpful to speak to the SAANS service who provide the diagnostic assessment for advice too. The contact number is 0114 271 6964.

You can call the National Autistic Society helpline on 0808 800 4104 – they can give you advice about your options, including private assessments.

What happens after a diagnosis at SAANS?

This information is taken from the SAANS NHS website:

We offer a diagnostic assessment which can help you better understand your needs, abilities and is the first step to helping you manage the condition.

After your diagnostic assessment we will offer you a follow-up appointment to discuss the outcome. If for whatever reason your circumstances change we can review the support you receive by reassessing your needs by re-referring you to the service.

We also provide time limited post-diagnostic support which can include:

  • Speech and language therapy to support you with your communication

  • Occupational therapy which can offer support with things like employment, education and day-to-day activities

  • Psychological support

  • Advice on medication

  • Group support

Full details are at https://www.shsc.nhs.uk/services/sheffield-adult-autism-and-neurodevelopmental-service-saans

Can I get a diagnosis privately?

Waiting lists for a diagnosis can be exceptionally long in Sheffield. There are many professionals and organisations that can provide private assessments for you. People sometimes opt for these as waiting times can sometimes be lengthy. Costs do vary and can be considered costly.

It is also important to note that some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you.

For this reason, you may wish to stay on the waiting list for an NHS assessment even if you also decide to go privately.

 

Mental Health and Autism

Do autistic people experience more problems with their mental health?

Autistic people are more likely to experience mental health problems than the general population. This can be because there are fewer resources and support to help develop coping skills. Also, we can experience more negative life events, and face stigma and discrimination from people and services. It is really important that services can properly identify mental health problems, so people can get the right support at the right time.

What should I do if I experience a mental health problem?

If you are struggling and feel that you might need some support with your mental health, it is important to try and get the right help. You may want to start by speaking to family, friends or carers you trust about the difficulties you are experiencing.

You can approach your GP for advice and a referral to mental health support and services. The Mind website has useful guidance on approaching your GP and how to prepare for the appointment. There is also a PDF guide you can download.

What help is there in Sheffield?

Your GP is generally the first person to speak with about getting professional help for a mental health problem. They will suggest various help and support for you depending on your individual situation and preferences.

You may wish to look at the Sheffield Mental Health Guide at https://www.sheffieldmentalhealth.co.uk/ which is a comprehensive guide to what is available locally.

There is also the Sheffield 24/7 mental health helpline on 0808 801 0440 for mental health support. Landline calls are free. You can ring anytime for help and advice as it is open 24 hours a day.

What is the Sheffield IAPT Service?

In Sheffield there is also the Improving Access to Psychological Therapies or IAPT service provided by the NHS who offer short term therapy and courses, which are often free. They provide a range of services and for some of these you can self-refer.

There are online sessions that you can do at home alone or in a group. They are currently online because of Covid restrictions. These range from Mindfulness to Stress Control to Low Mood.

For example, the Stress Control course is a six-session cognitive-behavioural therapy class used extensively in community-settings by the NHS.  It takes place online in a group setting. You can refer yourself to this course. Courses run regularly with starting dates every few weeks so check online to find the next one if you want to attend. The course schedule is here: https://iaptsheffield.shsc.nhs.uk/course-schedule/

This service can also offer one-to-one support in terms of CBT and counselling. The full details of what is on offer and how you can access this is here https://iaptsheffield.shsc.nhs.uk/how-can-we-help-you/

They have produced a set of guides on common mental health issues which can be accessed here http://www.selfhelpguides.ntw.nhs.uk/iaptsheffield/ You can also listen to the guides online by using the audio button on the guide if you prefer to listen rather than read. Topics include: Panic, Stress, Sleep Problems, Post Traumatic Stress Disorder, Social Anxiety plus many more.

What mental health guides are there specifically for autistic people?

The National Autistic Society have a range of guides on the following mental health issues especially for autistic people, parents and carers and professionals. These cover the following topics – click on the link for more information:

Addiction – www.autism.org.uk/advice-and-guidance/topics/mental-health/addiction

Anxiety – www.autism.org.uk/advice-and-guidance/topics/mental-health/anxiety

Autism Fatigue and burnout – www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue

Bereavement – www.autism.org.uk/advice-and-guidance/topics/mental-health/bereavement

Bipolar disorder – www.autism.org.uk/advice-and-guidance/topics/mental-health/bipolar-disorder

Catatonia – www.autism.org.uk/advice-and-guidance/topics/mental-health/catatonia

Depression – www.autism.org.uk/advice-and-guidance/topics/mental-health/depression

Eating Disorders – www.autism.org.uk/advice-and-guidance/topics/mental-health/eating-disorders

OCD – www.autism.org.uk/advice-and-guidance/topics/mental-health/ocd

Schizophrenia – www.autism.org.uk/advice-and-guidance/topics/mental-health/schizophrenia

Self-harm – www.autism.org.uk/advice-and-guidance/topics/mental-health/self-harm

Suicide – https://www.autism.org.uk/advice-and-guidance/topics/mental-health/self-harm

What if I need urgent help?

Please see the advice from Sheffield NHS here https://www.shsc.nhs.uk/urgent-help

If you are in a mental health crisis, this page has all the advice and guidance you need to keep yourself or a loved one safe.

What can I do if I am not happy with my GP or Mental Health Service?

Each service (GP, NHS service, etc) will have a complaints policy which you can request a copy of. However it is sometimes hard to make a complaint without some help and support so you could contact the Sheffield Advocacy Hub for more information.

They can provide information on the complaints process, and if necessary, support you to make your complaint. This support is free, confidential and independent of the NHS.

The contact details are below:

Email referrals@sheffieldadvocacyhub.org.uk or call on 0800 035 0396

Is there support for family members too?

You can contact the Sheffield Carers Centre for information, advice, signposting plus practical and emotional support. Please call: 0114 272 8362 from 10am – 4pm any weekday (there is an answerphone service outside these hours)

They also run a Mental Health Hub for carers to meet each month and support each other. Due to the Covid 19 situation this is currently on hold. https://sheffieldcarers.org.uk/

‘Autism’ – What is it and other issues

Why are there so many different names for autism and Asperger syndrome and what do they mean?
Over the years, different diagnostic labels have been used, such as: autism, Autism Spectrum Disorder (ASD), Autism Spectrum Condition (ASC), classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and Pathological Demand Avoidance (PDA). This reflects the different diagnostic manuals and tools used, and the different autism profiles presented by individuals. Usually a diagnosis of Asperger syndrome or HFA was given if the person was considered not to have a learning disability.

Because of recent and upcoming changes to the main diagnostic manuals, ‘Autism Spectrum Disorder’ (ASD) is now likely to become the most commonly given diagnostic term.

You can find out more information at the https://www.autism.org.uk/advice-and-guidance/what-is-autism

Is it better to use ‘autistic person’ rather than ‘person with autism’?
In line with current practice, the Sheffield Autistic Society uses identity-first language ie ‘an autistic person’ rather than ‘a person with autism’.

In 2015 the National Autistic Society along with the Royal College of Physicians conducted a survey of 502 autistic people and asked them their language preferences. The term ‘autistic’ came out with a 61% preference as opposed to ‘person with autism’ with just 18%. However we recognise that some people use the term ‘Aspergers’ or ‘Aspie’ to describe themselves as that was their diagnosis. Our Adult Asperger Group continues with this name as it has been running over 10 years and we didn’t want to confuse further!

For more information about this issue please look at https://www.identityfirstautistic.org/

What is autism?
Autism affects the way a person communicates and how they may experience the world around them. It is considered a spectrum condition, so this means that autistic people share some similar characteristics but are all different individuals. Autism is a broad spectrum and how it affects people varies, just as one person might vary from another.

Some autistic people can live relatively independent lives with others may facing additional challenges, including learning difficulties or disabilities, which mean their support needs are different.

How could autism affect people?
The characteristics of autism vary from one person to another, but there are four main areas of difference:
Social interaction, Sensory differences, Social imagination, Social communication

For more detailed descriptors please see:
https://www.ambitiousaboutautism.org.uk/information-about-autism/understanding-autism/what-is-autism

High levels of anxiety
Sensory processing difficulties and issues with social interactions may lead to a high level of anxiety for many autistic people as they navigate the social world.
For more information on mental health and autism please see our section on this in our FAQs.
Further information and support please see https://www.autism.org.uk/

Why are there more men than women diagnosed with autism?
More men and boys are currently diagnosed as autistic than women and girls. The ratio varies but is roughly 4:1. This is changing slowly as more women and girls are being diagnosed as autistic.
Attitudes towards autism and gender are changing, although we still have a long way to go. Many autistic women and girls are still struggling to get the support they need.
You can find out more at https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

Is there a link between gender identity and autism?
People may experience discomfort or distress when their assigned gender is different from the gender they identify with – this is known as gender dysphoria (GD). There is some evidence to show a link between gender dysphoria and autism, and that autistic people may be more likely than other people to have gender dysphoria.
You can find out more information on the gender page of the National Autistic Society here https://www.autism.org.uk/advice-and-guidance/what-is-autism/autism-and-gender-identity where they look at autism and gender identity in more detail.

Travelling Around

I am autistic. Can I have a free bus pass?

A disabled person’s travel pass enables free public transport for those who qualify within the South Yorkshire area. This is open to people aged 5 to 66 years old.

There are various conditions which can qualify you for a bus pass. These include an award of the higher rate mobility component of Disability Living Allowance or a Personal Independence Payment award (PIP) with a score of 8 points or more for “Moving Around” or “Planning a Journey”.

For more information about eligibility and how to apply see: https://www.sheffield.gov.uk/home/disability-mental-health/apply-for-disabled-persons-travel-pass

Can I also have a carer travel free with me?

If you receive PIP enhanced level, DLA higher rate care or higher rate attendance allowance, you may also qualify to have a carer travel with you free of charge. (See the link immediately above.)

Can I have a Blue Badge ?

The Blue Badge scheme helps you park closer to your destination if you have a disability or health condition that affects your mobility or you care for a child with a health condition. From 2019 the Blue Badge scheme has also been available for people with hidden disabilities including autism and mental health conditions.

The new criteria extend eligibility to people who:

– cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person (such as young children with autism)
-cannot undertake a journey without it causing them very considerable psychological distress
-have very considerable difficulty when walking (both the physical act and experience of walking)

Applications are made to your local authority. For Sheffield residents you can apply online here:

https://www.sheffield.gov.uk/home/parking/apply-for-blue-badge

Can I have a vehicle under the Motability Scheme?

“The Motability Scheme provides an affordable, worry-free way for people with disabilities to lease a car, scooter or powered wheelchair in exchange for their mobility allowance. The Scheme is operated by Motability Operations Ltd, under contract to Motability, a registered Charity.”

Eligible allowances include Higher Rate Mobility Component of Disability Living Allowance (DLA) and Enhanced Rate Mobility Component of Personal Independence Payment (PIP)

To find out more and for information about how to apply for the scheme see: https://www.motability.co.uk/about-the-scheme/

If you are not the disabled person, but are acting on their behalf as an appointee or nominee, then you may find the following information useful: Information for carers and appointees

Motability claim that the scheme has particular benefits for families with autistic members. See: https://news.motability.co.uk/scheme-news/how-the-motability-scheme-can-help-if-you-care-for-someone-with-autism/

For a lot more information about travel and mobility questions for autistic people, their families and carers see our Travel and Mobility page.

 

Quick List of Useful Contacts

(You may find further contact details on individual pages in the website)

Direct Payment Audit Team
Telephone 0114 273 5397 Email: DPUaudits@sheffield.gov.uk

Social Care
Telephone 0114 273 4567
Choose option 4 for Children’s Services, and option 5 for Adult Social Care

NHS Sheffield Clinical Commissioning Group
Telephone 0114 305 1000 Email: sheCCG.sheffieldCCG@nhs.net

Mental Health Services
North Sheffield recovery service: Northlands 0114 271 6217
South Sheffield recovery service: Eastglade 0114 271 6451
Single Point of Access 0114 226 3636

Disability Sheffield: Centre for Independent Living
Telephone 0114 253 6750
Text Only Number 07541 937 169
Email: CV19@disabilitysheffield.org.uk
Website: https://www.disabilitysheffield.org.uk/

Disability Sheffield PA Register
www.disabilitysheffield.org.uk
PAs interested in being redeployed or want additional work.
If you need a PA you can download a referral form from this website.

Government information on Statutory Sick Pay
https://www.gov.uk/statutory-sick-pay
Please note Statutory Sick Pay for self-isolation is from day 1 of self-isolation.