Autism - information and support
Advice page content
What is autism?
Autism can be understood as a ‘neurodiversity’. Neurodiversity refers to the different ways a person's brain processes information. An autistic person’s neurodiversity may need to be understood in terms of other co-occurring conditions such as ADHD or dyslexia.
If you are autistic your brain works a bit differently and you can behave differently. You may need some support to take part in everyday activities in a way that feels comfortable.
The 3 areas of difference are:
- Social understanding and communication - For example, an autistic person may find it harder to know how to take turns, use words in a way other people understand and follow everyday instructions.
- Flexibility, information processing and understanding - For example, an autistic person may have a preference for routine, take longer to process information and have an eye for detail.
- Sensory processing and integration - For example, an autistic person may be over or under-sensitive to things like sound, movement, taste or touch.
Your experience of the world can be happy and fulfilling if people around you understand and support you well.
This short video explains how every autistic person is unique, and their differences can show up in all sorts of ways.
This video called 'Why Autism is a Difference, not a Deficit ' is by Autistic Young Experts and offers a helpful explanation.
What might you notice?
Sometimes it is the parent who spends the most time with a child or young person that first notices behaviour that might mean they are autistic. Autism can sometimes be seen differently in girls and boys.
’Not Knowing’ is an animated short documentary about a 3-year-old autistic boy. The film illustrates his difficulties processing sensory information leading to increased anxiety that manifests in meltdowns. At first, his parents don’t fully understand his needs but after receiving some support from specialist services the parents better understand the condition and their son.
Amazing Things Happen is a film by Alexander Amelines that gives an uplifting introduction to autism for young non-autistic audiences, aiming to raise awareness, understanding and tolerance in future generations.
What should I do if I think my child might be autistic?
Information and helpful strategies
Know you are not alone. The World Health Organisation estimates that more than 1 in 100 people are autistic. You can find a list of autistic people you may have heard of here.
Speak with other parents who may have been in a similar situation. City and Hackney Carers Centre are the local host provider of the new Parent-Carer Forum. They will be able to put you in touch with other local parents who have had similar experiences.
Look at trusted sources of information online like Health Talks. 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. Different books are available for different ages and people e.g. parents and or teachers.
Which service can help you understand your child and access specialist support?
These services and organisations can help parents who are navigating supporting a child who may be autistic.
- Health Visiting Service
- Your GP
- Your child’s local Children’s Centre inclusion lead
- Portage (under 2’s not yet in nursery)
- Speech and Language Therapy Service or go to a Talking Walk-in (drop-in assessments for early years)
- Keyworking Team at Hackney Ark
- Early Support and Area SENCo (for children attending nursery)
- Your child’s Nursery manager or SENCo
- Family Coaches
- Autism Family Intervention Worker
- Educational Psychology Parent Advice Sessions
- SENDIAGS (for help communicating your child’s needs to school)
- Support Workers in Children's Centres (ask in your local centre)
- NAS (National Autistic Society)
Is seeking a diagnosis right for you and your child?
Some people might be worried about their child being ‘labeled’ as autistic but most people find it helpful to know one way or the other. It helps them to be able to understand autism and how it may affect their child.
Getting diagnosed can help your child get the extra support they might need including:
- Understanding your child's needs and how to support and help them.
- Specific information and advice about support for your child at school
- Support for parents and carers of autistic people, including financial benefits or financial support directly for autistic people themselves.
How do you get a diagnosis of Autism?
Autism is diagnosed by looking at 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 education setting there may also be an observation of them during school time.
Who can make a referral?
Children are referred for a diagnosis by a professional e.g. GP, SaLT, Health Visitor, School SENCo. Referrals are 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.
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’s and young people under 18 years old.
Once the referral is received it will be assigned to the right team. They will: ask for more information from people who know the child well and invited the child or young person for further assessment. This could be Hackney Ark or CAHMS 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 and 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 or carers and if appropriate the child's school, nursery or other education 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 City and Hackney who have not had a previous diagnosis of Autism. People can either self-refer or request a referral via their GP.
Who can help if my child has been diagnosed with Autism?
When you receive a diagnosis you will also be given some useful information to get you started but this website provides lots of information about local support, services, and processes.
For parents and carers,
You can also attend a post-diagnosis group with other parents who are in a similar situation. This might be an Early Bird course, Pegasus Group, Next Steps, NAS Teen Life course or a session run by the Autism Family Intervention Worker. You can find information about post-diagnostic groups for parents in the City and Hackney Parent Programme Directory here.
Many local NHS community health services in Hackney are provided through Hackney Ark Centre for children and young people with special educational needs and disabilities. Keyworking can help parents eligible for more than 2 services
Health services offer short workshop programs like the Sensory Processing and Regulation Workshops or the Independence Skills workshops run by Occupational Therapists and Neurodevelopmental Team (NDT) parent Coffee Mornings.
For young people
Young people might attend a Mind the Gap group to meet up with other young people and find out more about autism and strategies that may be helpful.
There are also useful websites like Autism understood, a website that has been created by and for young autistic people.
The Ambitious About Autism Youth Network help connect young autistic people in online sessions safely. Ambitions About Autisms My Voice volunteers unanimously decided that they wanted to run a campaign on mental health. The Know Your Normal campaign aims to reduce the stigma around mental health and create resources for autistic young people to work out and understand what their normal is. You can find the Know Your Normal Ambitious About Autism resource here.
Support in education
Different services provide different support but many services work together in schools and settings at Team Around the Child (TAC) or Team Around the Family (TAF) or Team Around the School (TAS) meetings. These services may include Educational Psychologists, Speech and Language Therapists and the school SENCo (special educational needs coordinator).
Anxiety can be something that affects children and young people who are autistic and they may need specific help to learn strategies that can help. Most schools offer support from the Mental Health Support Team (MHST). If more specific support is required a referral to CAMHS services can be made for specialist support.
If you need help discussing support for your child in school or college you can get free specialist information, advice, and support from Hackney SENDIAGS (Special Educational Needs and Disability Information Advice and Guidance Service). Young people can access information, advice, and support directly from Haclney SENDIAGS and just need to contact the service to make a self-referral.
What does good autism provision in schools look like?
In Hackney’s schools and settings, we use the Autism Education Trust (AET) framework and resources to develop a positive strength-based approach that enables autistic children and young people to thrive. The AET has been working with autistic young people, their parents, experienced professionals, and academics for many years to understand the experiences of autistic people and how to make educational settings better for autistic learners. The AET describes Good Autism Practice through the 8 Principles:
- Understanding the strengths, interests, and needs of each autistic child.
- Enabling the autistic child to contribute to and influence decisions.
- Collaboration with parents/carers and other professionals and services.
- Workforce development related to good autism practice.
- An ethos and environment that fosters social inclusion for autistic children.
- Leadership and management that promotes and embeds good autism practice.
- Targeted support and measuring the progress of autistic children.
- Adapting the curriculum, teaching, and learning to promote well-being and success for autistic children.
We are also informed by the SCERTS Model. SCERTS encourages us to focus on adapting our teaching, spaces and interactions to enable children to learn to communicate in meaningful and useful ways and to be able to regulate their emotions. SCERTS is used in a supportive and collaborative way to empower professionals to develop effective ways of working, particularly with children at early stages of communication. Most Hackney Speech and Language Therapists and Specialist Teachers are SCERTS trained.
Where can my child go to school?
At Hackney Education we recognise that all teachers are teachers of pupils with SEND and that in the first instance, teachers should be supported to deliver Quality First Teaching, adapting learning appropriately for autistic children by making reasonable adjustments.
All schools and education settings must follow the advice in the SEND Code of Practice 2015.
Schools can use strategies outlined in the Graduated Response (also known as ordinarily available provision). The strategies outlined in this document can involve external professionals and specialists if required.
All schools must publish School SEN Information Reports to explain to parents how they deliver support in their settings. They can put children on the SEN Register and step them up to SEN (Special Educational Needs) Support level which can draw in additional funding for support in school.
If this is reviewed and found to be not enough to help your child or young person reach their full educational potential the school's SENCo or parents can make a request for a EHCNA (Education, Health, and Care Needs Assessment) which may indicate and EHC Plan is required.
Mainstream with autism ARP (additional resource provisions)
Some mainstream schools have autism Additional Resourced Provisions or ARPs. A panel decides on who gets an ARP place. You can find out more about autism ARPs here.
Special schools are schools for pupils who cannot have their needs met in mainstream schools. Hackney has 3 special schools and all of them work with autistic pupils. The Garden School is an autism-specific specialist school. You can find more information about Hackney’s Special Schools here.
Support for over 18s
Connecting with others
You can meet with other autistic adults and their allies and get involved with helping to make Hackney autism friendly via the Experts by Experience group.
Autism Communication Cards
There are FREE-coproduced Hackney autism communication cards to help if you are feeling overwhelmed and you are out in the community. You can show these to people e.g. Police and they will understand they need to make reasonable adjustments to help you during interactions. You can request these online via the fault autism article on Hackney Councils' website.
Autistic friendly neighborhoods
A summary of the work that is happening in Hackney that autistic residents may want to know about or get involved with is available on Hackney Coucnil’s website here.
Training and work
If you are autistic, have an EHC Plan, and are aged 18-25 you may be interested in the Supported Internship program.
Hackney Works are also available to support autistic adults with finding and applying for jobs. Care Act eligible autistic adults can get advice and support from Hackney Supported Working service.
When you are in work you can get support for reasonable adjustments via Access to Work and support with issues that may arise from disability rights organisations or a Union if you become a workplace member.
Support with your mental health
The adult autism diagnostic service will offer some post-diagnosis sessions.
If you are experiencing difficulties with your mental health you can make a self-referral to Talk Changes.
Your GP will be able to support and advise you or make referrals to specialist services if needed.
The Lead Practitioner for Learning Disabilities and Autism at Homerton Hospital
Homerton Hospital wants to improve their services for patients with learning disabilities and/or autism and has a Lead Practitioner for Learning Disabilities and Autism. This is a specialist who helps staff support you if you have a learning disability or are autistic while you are in hospital.
If you need are having a mental health crisis you can go to the A&E department at Homerton Hospital. Staff have received training to understand how to work with and help autistic people.
Support from Social Services
If you need support from social care services you can contact the Information and Access team or make an online self-referral here. Add information about the support for autistic residents specifically from the guidance once approved/adopted.
Police Autism Passport and autism reasonable adjustment alert cards
The autism passport and alert cards can help if you get stopped by or need to involve the police in something so that they understand what reasonable adjustments they should be made for you.
No personal data on people requesting these is held by the police. The scheme involves a small card (similar to a bank card) that the person carries with them and can be quickly shown to the police. It alerts officers that the person may have communication issues. The autistic person can carry a small A5-sized passport in their bag or rucksack. This goes into more detail about how the officer needs to communicate with the person, including how to help the person and any relevant information.
There is not a downloadable version of the card available to the public and these must be requested by individuals.
Any person who requires an autism police passport and or alert card can email email@example.com to request a copy which is posted out to the applicant.