Autism: Information and support for families

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What is autism?

Being autistic
Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Below is a list of difficulties autistic people may share, including the three key difficulties required for a diagnosis.

Social communication
Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Some autistic people are unable to speak or have limited speech while other autistic people have very good language skills but struggle to understand sarcasm or tone of voice. Other challenges include:

taking things literally and not understanding abstract concepts
needing extra time to process information or answer questions
repeating what others say to them (this is called echolalia)

Social interaction
Autistic people often have difficulty 'reading' other people - recognising or understanding others' feelings and intentions - and expressing their own emotions. This can make it very hard to navigate the social world. Autistic people may:

appear to be insensitive
seek out time alone when overloaded by other people
not seek comfort from other people
appear to behave 'strangely' or in a way thought to be socially inappropriate
find it hard to form friendships.

Read more about social communication and social interaction challenges on the National Autistic Society website.

Rigidity of through and repetitive and restrictive behaviour With its unwritten rules, the world can seem a very unpredictable and confusing place to autistic people. This is why they often prefer to have routines so that they know what is going to happen. They may want to travel the same way to and from school or work, wear the same clothes or eat exactly the same food for breakfast.

Change to routine can also be very distressing for autistic people and make them very anxious. It could be having to adjust to big events like Christmas or changing schools, facing uncertainty at work, or something simpler like a bus detour that can trigger their anxiety.

Autistic people may also repeat movements such as hand flapping, rocking or the repetitive use of an object such as twirling a pen or opening and closing a door. Autistic people often engage in these behaviours to help calm themselves when they are stressed or anxious, but many autistic people do it because they find it enjoyable.

Read more about repetitive behaviours and dealing with change on the National Autistic Society website.

Over- or under-sensitivity to light, sound, taste or touch (sensory differences)
Autistic people may experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain.

For example, they may find certain background sounds like music in a restaurant, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Many autistic people prefer not to hug due to discomfort, which can be misinterpreted as being cold and aloof.

Many autistic people avoid everyday situations because of their sensitivity issues. Schools, workplaces and shopping centres can be particularly overwhelming and cause sensory overload. There are many simple adjustments that can be made to make environments more autism-friendly.

Read more about sensory differences on the National Autistic Society website.

Highly focused interests or hobbies
Many autistic people have intense and highly focused interests, often from a fairly young age. These can change over time or be lifelong. Autistic people can become experts in their special interests and often like to share their knowledge. A stereotypical example is trains, but that is one of many. Greta Thunberg's intense interest, for example, is protecting the environment.

Like all people, autistic people gain huge amounts of pleasure from pursuing their interests and see them as fundamental to their wellbeing and happiness.

Being highly focused helps many autistic people do well academically and in the workplace, but they can also become so engrossed in particular topics or activities that they neglect other aspects of their lives.

For more information, have a look at the Spectrum magazine which is written for and by autistic people.

Extreme anxiety
Anxiety is a real difficulty for many autistic adults, particularly in social situations or when facing change. It can affect a person psychologically and physically, and impact quality of life for autistic people and their families.

It is very important that autistic people learn to recognise their triggers and find coping mechanisms to help reduce their anxiety. Many autistic people have difficulty recognising and regulating their emotions. Over one third of autistic people have serious mental health issues and too many autistic people are being failed by mental health services.

Read more about anxiety and mental health on the National Autistic Society website.

Meltdowns and shutdowns
When everything becomes too much for an autistic person, they can go into meltdown or shutdown. These are intense and exhausting experiences.

A meltdown happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control. This loss of control can be verbal (eg. shouting, screaming, crying) or physical (eg. kicking, lashing out, biting) or both. Meltdowns in children are often mistaken for temper tantrums and parents and their autistic children often experience hurtful comments and judgmental stares from less understanding members of the public.

A shutdown appears less intense to the outside world, but can be equally debilitating. Shutdowns are also a response to being overwhelmed, but may appear more passive - eg. an autistic person going quiet or 'switching off'. One autistic woman described having a shutdown as: 'just as frustrating as a meltdown, because of not being able to figure out how to react how I want to, or not being able to react at all; there isn’t any ‘figuring out’ because the mind feels like it is past a state of being able to interpret.'

Get advice about meltdowns and shutdowns on the National Autistic Society website.

Information from the National Autistic Society, November 2023

What should I do if I think my child might be autistic?

You can find helpful advice from the NHS on how to support autistic children and young people here, as well as information about the assessment and diagnostic process here: Recommendations | Autism spectrum disorder in under 19s: recognition, referral and diagnosis | Guidance | NICE

NICE stands for National Institute for Health and Care Excellence. They produce guidance for practitioners on the diagnosis and management of a variety of conditions, including autism.

Speak with other parents who may have been in a similar situation. The City Parent Carer Forum offers support for parents and carers of all children and young people in the City of London who have special educational needs and or a disability (SEND).

Know you are not alone. The World Health Organisation estimates that more than 1 in 100 people are autistic.

Further resources:
There are multiple organisations which offer information, advice and support for people who have been diagnosed with, or who suspect that they or their family members might have autism.

See the NHS website for more information.

You could also look at trusted sources of information online, such as National Autistic Society or Autism Education Trust. You may need to use the search word autism or autistic.

Jessica Kingsley Press publishes and sells a range of specialist topic books, including on neurodiversity and autism. These can help you and your child or young person understand and develop useful strategies to use. Available books are by both autistic and neurotypical authors. Books are available for different ages and people, e.g. parents and or teachers.

It is important to be cautious of misinformation and using trusted sources, such as the National Autistic Society when researching autism. Please see the list of support networks at the end of the page for more information.

How to get a diagnosis and make a referral?

Autism is diagnosed by assessing a child or young person.

A diagnosis of autism will involve a few meetings with a multidisciplinary medical and health professional team.

Your child may be asked to attend a series of appointments, so specific skills and activities can be observed and assessed. Once this process is complete, a diagnosis of autism may be confirmed.

If your child is in an educational setting there may also be an observation of them during school time.

The process will include the parents and/or carers.

Who can make a referral?
Children are referred for a diagnosis by a professional, e.g. a GP, SaLT, Health Visitor, School SENCo (Special Educational Needs Coordinator).

The following process applies if you are registered with a GP in the City of London or the London Borough of Hackney. For information about the process if you are registered with a GP in Tower Hamlets, please see the bottom of this section.

If you are registered with a GP in the City of London or Hackney:
Referrals are made to either the community paediatricians at the Hackney Ark through MARs (Multi-Agency Referrals) meetings for under 5’s or through the CAMHS Single Point of Access referral for children and young people over 5 and under 18 which can be found in each of the entries for CAMHS listed here.

Under 5s
Children are usually seen at the PATCH Neurodevelopmental assessment clinic first, where a detailed assessment is carried out with a paediatrician. This assessment will include talking to the parents/carers about their concerns, assessing the health and overall development of the child, and a review of the child's physical health.

If it is thought a child may be autistic they will then be referred to the Complex Communication Clinic (CCC). CCC provides a Multidisciplinary Team (MDT) assessment meaning a range of professionals will be involved in the assessment.

The assessment might include:

an individual play-based assessment
gathering further information from the parent/carers and/or
a visit to the child’s education setting or home environment

Children over 5 and young people under 18 years old
Once the referral is received, the child or young person will be invited for further assessment. This could be Hackney Ark or CAMHS at Homerton Row.

Some children may be referred from MARs meetings to the Social Communication Clinic or SCAC. The assessment will include information gathering from the parents and/or carers, as well as the young person themselves. The tool used in the assessment is known as ADOS Autism Diagnostic Observation Schedule.

Once the assessment has been completed, parents or carers will be invited for a feedback appointment. A report will be provided and shared with the child's parents and/or carers and, if appropriate, the child's school, nursery or other educational setting.

You should keep this report in a safe place and make a copy of it, as it will be a key piece of evidence later; for example, if you apply for Disability Living Allowance or Personal Independence Payments.

Young people and adults aged 18+
The City and Hackney Adult Autism Service offers diagnosis, brief post-diagnostic interventions, and advice to adults living in the City and Hackney who have not had a previous diagnosis of Autism. People can either self-refer or request a referral via their GP.

You can find a flow chart of the process for an adult diagnosis in Hackney here (PDF 102 KB)

If you are registered with a GP in Tower Hamlets:

Under 5s
If your child is under 5 years old, you should discuss your concerns with someone from one of the following services:

Your child’s key person, teacher, Inclusion Coordinator (INCO) or Special Educational Needs Coordinator (SENCO) at the childcare provider or school that your child attends.
Your local Children and Family Centre
Your child’s health visitor
Your GP
Your speech and language therapists from the speech and language therapy service

Children over 5 and young people under 18 years old
If your child is over 5 years old, you should discuss your concerns with someone from one of the following services:

The Special Educational Needs Coordinator (SENCO) or Inclusion Coordinator (INCO) at your child’s school.
Your child’s class teacher or form tutor.
Your GP
Your local Children and Family Centre
The speech and language therapist based in your child’s school. The therapist may be part of the Barts Health NHS speech and language therapy team or come from another provider. Talk to the SENCO in your school to make an appointment to meet the therapist.
If your child is already receiving support from Tower Hamlets CAMHS, then talk to your CAMHS care coordinator.

How do I get a diagnosis in Tower Hamlets?
If you think that a child/young person may have autism, they can be referred to ASDAS (Autism Spectrum Disorder Assessment Service).

ASDAS is a specialist autism diagnostic service for children and young people aged up to 19 years old and is based at Mile End hospital. The team is made up of different professionals and together they carry out specialist assessments for autism.
More information on ASDAS.

In some cases where your child also has significant emotional, behavioural or mental health difficulties, CAMHS will complete a specialist autism assessment. In this case, you do not need a referral to ASDAS.
Some parents choose to buy a private autism assessment. There are many providers to choose from and it can be difficult to find the best provider for you. A good quality assessment will always be done by a team of experienced professionals who follow the NICE standards for autism assessments.

The assessment for autism should include information about your child or young person’s development, an observation of their communication and interaction skills and a medical examination. Additional reports from nursery or school and other professionals should also be considered.

Local services supporting autistic adults in Tower Hamlets:
Adult Autism Service (Tower Hamlets)
This is a diagnostic service for adults aged 18 years and over. The service offers assessments and diagnosis to people with communication and social interaction difficulties which may be due to being on the autistic spectrum.

The service also provides brief interventions and signposting to those who receive a diagnosis of autism.

Community Learning Disability Service (CLDS)
CLDS is a team of health staff and social workers who help adults (persons aged 18 and over) with a learning disability who live in Tower Hamlets.
This service can only support adults with a learning disability. Many autistic adults do not have a learning disability.

Special Educational Needs (SEND) Section
Young adults aged up to 25 years old may still be supported in education or training through an education, health and care (EHC) plan. EHCPs are managed by the SEND section in the Town Hall.

Support networks

Local groups and organisations:

Adult Autism Service
The City and Hackney Adult Autism Service is a National Health Service (NHS) that offers diagnosis, brief interventions and advice to adults living in City and Hackney who have not had a previous diagnosis of Autism.

For more information: 0-25 SEND Local Offer | Family Information Service | Adult Autism Service (City and Hackney) (hackneylocaloffer.co.uk)

Autistic Hackney and City of London
Autistic residents in Hackney and the City of London are working with the local councils and NHS on a new plan to improve services for autistic people. Have your say by joining the Autism Alliance's Experts by Experience work group.

For more information: Autistic Hackney

City Parent Carer Forum (CPCF)
Supporting parents and carers of all children and young people in the City of London who have special educational needs and or a disability (SEND).

For more information: City Parent Carer Forum - City of London Family Information Service

Community Learning Disability Service (CLDS)
CLDS is a team of health staff and social workers who help adults (persons aged 18 and over) with a learning disability who live in Tower Hamlets.
This service can only support adults with a learning disability. Many autistic adults do not have a learning disability.

For more information: Community Learning Disability Service (CLDS)

Special Educational Needs (SEND) Section
Young adults aged up to 25 years old may still be supported in education or training through an education, health and care (EHC) plan. EHCPs are managed by the SEND section in the Town Hall.

For more information: Special Educational Needs (SEND) Section

Tower Hamlets and City SEND Information, Advice and Support Service (Tower Hamlets and City SENDIASS)For parents and carers of children and young people with Special Educational Needs and Disabilities (SEND) from birth to 25 and children and young people independent of their parents. For more information: Tower Hamlets and City SEND IASS :: Home

London-wide groups and organisations:

London Autism Group Charity
'We are a unique charity serving the Autistic community of London and surrounding counties in the UK. We are led by Autistic people and kind, compassionate allies. We leverage the insight of lived-experience to support Autistic people at every stage of their lives. We offer both Mental Health and Material Support to Autistic people and Carers.'

For more information: Home | London Autism Group Charity

National groups and organisations:

Autism Education Trust - For parents
Every autistic child is different. Our training modules and materials have been designed to explore and build on these differences to support all autistic children to reach their full potential.

All our materials have been developed in collaboration with autistic young people, parents, practitioners and consultants with expertise in autism.

Although our training materials and most of our resources are aimed at teaching professionals, you, as a parent, can help your child by recommending AET training to your child’s teachers and SENCO.

For more information: For Parents | Autism Education Trust

Ambitious about Autism
'The voices of autistic children and young people are at the heart of everything that we do. We want to help create a world where autistic children and young people are heard, included and supported.'

For more information: Know Your Normal | Ambitious about Autism

Autism Plus
Life Changing Support for People with Autism, ADHD, Learning Disabilities, Mental Health Conditions and Complex Needs.

For more information: Autism Plus - Adding Value to Lives

National Autistic Society
'We are here to transform lives and change attitudes to help create a society that works for autistic people.'

For more information: National Autistic Society (autism.org.uk)

Ambitious about Autism - Supporting autistic young people and their families

Autism Youth Network
The youth network is for autistic young people between the ages of 13 and 25, who can access a fun, friendly and monitored online space.

It is a platform for autistic young people to be themselves, share experiences and connect with others. All young people can take part in voluntary opportunities including ways to advocate and improve services for autistic young people nationally, watch informative webinars and access a live feed of information. Then from 16, young people can join online social groups, find paid work experience opportunities and attend online peer support sessions.

For more information: https://ambitious-youth-network.ambitiousaboutautism.org.uk/

Talk about autism
Our online community for parents and carers of autistic children and young people, Talk about Autism is a safe online space to access information and peer support by connecting with people who can both understand the worries and share the joys as a parent or carer.

The free community is a private, moderated space to share experiences and exclusively access our webinar series with support from experts, advocates, and a range of contributors with a professional interest and lived experience of autism.

For more information: https://forum.ambitiousaboutautism.org.uk/

Employ Autism
We provide paid work experiences for autistic young people aged 18 - 25 through our Employ Autism programme. The opportunities we offer are with employers who have undertaken our full training on understanding autism in the workplace.

The Employ Autism program has opportunities for both Local Authorities, as an employer, and for young autistic job seekers in the community, both of whom are supported on the recruitment and training journey.

https://www.ambitiousaboutautism.org.uk/what-we-do/employment

Hidden Disabilities Sunflower

Some disabilities, conditions or chronic illnesses are not immediately obvious to others. For some people, this can make it hard to understand and believe that someone, with a “non-visible” condition genuinely needs support. Some people question whether you have a disability because you don’t look ‘like you have a disability".

That is why the City of London support the Hidden Disabilities Sunflower - to encourage inclusivity, acceptance and understanding.

It is a simple tool for you to share that you have a hidden disability. Simply by wearing the Sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.

The Sunflower - always here to support you
The Hidden Disabilities Sunflower is here every day of the year to support people living with non-visible disabilities in their communities by raising awareness, training businesses and sharing stories to help create a more inclusive, understanding society.

What is the Hidden Disabilities Sunflower?
The Hidden Disabilities Sunflower is a simple tool for you to voluntarily share that you have a disability or condition that may not be immediately apparent – and that you may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces.

Just because you can’t see it, doesn’t mean it is not there
Globally 1 in 6 of us live with a disability. That is approximately 1.3 billion people.

But while some of us experience a disability that is visible, many have a non-visible condition or experience a combination of both visible and non-visible conditions. These disabilities can be temporary, situational or permanent. They can be neurological, cognitive and neurodevelopmental as well as physical, visual, auditory and include sensory and processing difficulties. They can also be respiratory as well as chronic health conditions such as arthritis and diabetes, chronic pain and sleep disorders.

Making the invisible visible
As diverse as these conditions are, so are your individual access needs and the barriers you face in your daily life. So you can opt to wear the Sunflower to discreetly be seen in shops, at work, on transport, or in public spaces.

A space to inform and be informed
Get insights into what non-visible disabilities are, how the Sunflower supports people with hidden disabilities and listen to our Sunflower wearers sharing their individual moments and experiences

National Autistic Society - Accessible environments

The National Autistic Society's Accessible environments resource looks at how you can adapt your space to support autistic people and their families

Many autistic people have sensory differences, meaning they can experience over or under sensitivity to different sensory stimuli (for example, light or sound).

This can be a positive thing, but can also cause distress or discomfort. Some examples of what may cause sensory overloads or shutdowns are:

Bright lights
Excessive noise
Smells
Crowds
Queues
Overly hot or cold environments.

Watch our  Too Much Information film  which shows how Alex, aged 11, experiences a typical UK shopping centre and how overwhelming it can become. Alex finds it difficult to filter out noises and lights as he walks into the centre.  

Many autistic people will avoid everyday situations because of their sensory sensitivities. Simple adjustments can be made to make environments more autism-friendly.

There are many ways you can adapt your environment to minimise the risk of sensory overload. Please see a list of these adjustments below:

Accessible environments - hints and tips

Bright lights

Reduce the brightness of the lights within your buildings, whether through dimming or turning off lights wherever possible – this can be in a specific area, if doing this for the entire building is not feasible  
Have sensory tools such as sunglasses available for customers

Noise

Reduce the volume of background music, either throughout the entire premises or in a specific, clearly signposted area. You can also signpost if an area is likely to be particularly noisy at a different time
Provide alternatives to noisy hand dryers in toilet areas, such as paper towels
Have headphones or ear defenders available for customers to use, suitable for use by both children and adults

Crowds and queues

Let autistic customers know, on your website for example, which times tend to be quieter and which are busier.
During busy periods, if possible allow customers into your venue outside of usual opening hours times, opening earlier or later in the day
If appropriate, use a fast track system for autistic customers, so they can bypass queues and large crowds which may cause anxiety and sensory overload – the National Space Museum for example has such a system

Temperature

Assess in which ways you currently monitor temperatures and can adapt such temperatures, across your buildings

Maps

Autistic people often like to prepare in advance before visiting shops, stores, museums, etc. This reduces their level of anxiety. Having maps on your website will help people prepare and familiarise themselves before their trip.
If possible, put together a sensory map, stating which parts of a premises are particularly bright, or noisy. A good example is the British Museum’s sensory map
If appropriate, offer alternative routes, for example ‘quiet trails’, through a venue

Prepare a sensory story

A sensory story takes a visitor on a journey through your venue using the senses. An example of a sensory story is Thornbridge Hall, a stately home in Derbyshire

Have a designated quiet space

Have a quiet space within your business or service that is away from the main crowds, with reduced noise and lighting where an autistic person and their companions could retreat to if an environment becomes too much. This space should also be clearly signposted.
Such quiet spaces could also feature soft seating and sensory toys, such as fidget toys, stress balls and games. The St. Enoch Shopping Centre in Glasgow features such a quiet space.

Research from University College London in 2021, looking into how neurodivergent students can be better supported, saw 92% of people surveyed state a quiet space would be beneficial and 60% say quiet spaces in retail environments were important, or very important.

Autism hour

Organise a special autism hour during a less busy period, or this could be a quieter session just for autistic visitors where lighting is dimmed and background noise is reduced. This could be a monthly event, opening an hour or two later or earlier than usual.

Lidl stores in Northern Ireland offer Quiet Hours, from 6pm-8pm every Tuesday evening, as do other supermarkets such as Morrisons and Asda.

Relaxed performances

Theatres, cinema and other venues that offer live entertainment could offer specific performances or screenings that are autism-friendly. This could include:

Reducing sound levels
Changing lighting
A relaxed attitude regarding moving in and out the auditorium
Quiet areas away from the main areas of the venue
Training for staff and cast to help autistic people.

Please remember that every autistic person has individual sensory needs and preferences, but there are adaptions you can make that will help many autistic visitors.

More information and useful links:

Good practice guide
Our  Good practice guide, produced in collaboration with Mind, aims to help mental health professionals adapt talking therapies for autistic adults and children. Informed by the views of mental health professionals, over 1,500 autistic people and almost 2,000 family members, the guide describes often simple adjustments and adaptations which can make a huge difference. There is useful advice on what services can do as a whole to improve the experience of autistic people, as well as suggestions for therapy sessions.

Too Much Information
The National Autistic Society’s  Too Much Information  campaign was created to increase public understanding of the five core features of autism and to give people and understanding of the actions they can take to help autistic people. 