Autism

Autism Pre Diagnosis Information

If you think your child is showing signs of autism and are looking for a diagnosis, the process can feel daunting and overwhelming. Often there is not just one way to getting a diagnosis, and it can feel like there is little information or support available.

Our pre diagnosis information describes what autism is, other conditions associated with autism and the process of diagnosing and assessing autism. It also contains details of services that will be able to support you.

If your child has already received an ASD diagnosis, you might find it helpful to read the information in our Autism: Post Diagnosis section.

What is Autism Spectrum Disorder (ASD)?

Autism Spectrum Disorder (ASD) and Autism are terms used to describe a disability that affects how a person communicates with and relates to other people and the world around them. There are different ways a person can be affected by ASD, but the three main areas of difficulty are known as the 'triad of impairments'.

They are:

social interaction (difficulty with social relationships).
social communication (difficulty with verbal and non-verbal communication).
social imagination (repetitive behaviour and/or difficulty predicting outcomes or other people's reactions).

People with autism may also experience over or under sensitivity to sounds, touch, tastes, smells, light or colours.

What is 'the autistic spectrum'?

Autism is a spectrum condition. This means that people with autism will share certain difficulties, but being autistic will affect them in different ways. Each individual with autism is unique. Many people on the autistic spectrum are extremely talented visually, musically and academically. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning they need different levels of support.

What are the symptoms of ASD?

The characteristics of autism are different from one person to another. But, for a diagnosis to be made, a person will usually be assessed as having persistent difficulties with social communication and social interaction and will show restricted and repetitive patterns of behaviour or interest. Below are some of the characteristics shown by children and adults with autism:

0 to four years (pre-school children)

Delayed speech development (for example, speaking less than 50 different words by the age of two), or not speaking at all.
Not responding to their name being called, despite having normal hearing.
Rejecting cuddles initiated by a parent or carer (although they may initiate cuddles themselves).
Avoiding eye contact.
Repetitive movements (such as flapping their hands, rocking back and forth, or flicking their fingers).
Playing with toys in a repetitive and/or unimaginative way (for example, lining blocks up in order of size or colour, rather than using them to build something).

Five to 16 years (school-aged children)

Avoiding eye contact or using spoken language.
Seeming to talk "at" people, rather than sharing a two-way conversation.
Taking people's speech literally and not understanding sarcasm, metaphors or figures of speech.
Not being aware of other people's personal space, or feeling extremely uncomfortable with people entering their own personal space.
Little interest in interacting with other people, or having few close friends, despite attempts to form friendships.
Rarely using gestures or facial expressions when communicating.
Repetitive movements (such as flapping their hands, rocking back and forth, or flicking their fingers).
Playing in a repetitive and unimaginative way, often preferring to play with objects rather than people.
Developing a specific interest in a particular subject or activity.
Preferring to have a routine and getting very upset if there are changes to their normal routine.

Post-16 and adults

Some people with autism go through life without a diagnosis, but may feel they don't quite fit in and learn how to cope with life in their own way. However, an increasing number of people are diagnosed with autism in their teenage years or adulthood, often in relation to learning, social or emotional difficulties. For example, an individual might experience the following:

Difficulty using and understanding verbal and non-verbal language (such as gestures, facial expressions and tone of voice, as well as jokes and sarcasm).
Difficulty recognising and understanding people's feelings and managing their own.
Difficulty understanding and predicting other people's intentions and behaviour.

You can find out more about the different symptoms of autism on the National Autistic Society, Autism Speaks and NHS websites. If you are concerned about your child's development, or if you notice any of the signs of ASD in your child, speak to your GP or health visitor for more information.

Information from: NHS Choices, National Autistic Society, Autism Speaks

Other conditions associated with Autism Spectrum Disorder (ASD)

People with Autism Spectrum Disorder (ASD) often also have symptoms or aspects of other conditions, but sometimes these are not diagnosed because of communication difficulties.

Some medical conditions associated with autism include the following.

Pathological Demand Avoidance (PDA): This is a behaviour profile that is seen in some individuals with autism. Some features of a PDA profile include: avoiding everyday expectations (for example, avoiding getting up or joining in an activity), using distractions/giving excuses, excessive mood swings and obsessive behaviour that is often focussed on other people.
Learning disability: Autistic people can have different 'degrees' of learning disability, which can affect all aspects of their life. This can include studying in school to learning how to wash themselves or make a meal. Some people are able to live fairly independently, but others may require lifelong, specialist support. People with a diagnosis of 'Asperger Syndrome' do not usually have accompanying learning disabilities, but may still have specific learning difficulties, such as dyslexia.
Attention Deficit Hyperactivity Disorder (ADHD): ADHD is common in people with autism. If someone has ADHD, they have significant difficulties in terms of their attention, over-activity and impulsiveness.
Dyspraxia: Autistic people often have difficulties with motor co-ordination and, if they are significantly affected in this way, they may be given a diagnosis of dyspraxia. As with autism, people with dyspraxia may be over or under sensitive to certain sensory stimuli.
Epilepsy: Around 20-40% of people with autism also have epilepsy (this rate increases steadily with age). Some behaviours associated with autism can look like seizures, for example, staring or repetitive movements.
Sensory difficulties: These may include visual or hearing impairments.
Other associated conditions include: Allergic disorders (e.g. asthma and food allergies), Tourette's syndrome, Obsessive Compulsive Disorder (OCD), Generalised Anxiety Disorder , Depression, Bipolar disorder and sleep problems.

Although autism is often diagnosed alongside other conditions, it is important to support individuals with more than one condition in a way that meets all their needs, but also to understand that their autistic needs are separate.

Information from: NHS, National Autistic Society, National Autism Association

Diagnosis

What are the benefits of diagnosing autism?

Getting an assessment and diagnosis of autism can be extremely helpful for you and your child because:

it helps your child and those they are in contact with (family, friends, school, employer) to understand why they experience certain difficulties and what can be done to help; and
it may help you and your child access appropriate services and benefits.

How do I get a diagnosis for autism?

You need to have an assessment to be diagnosed with autism. This will be done by a healthcare professional or team who specialise in diagnosing autism. How to get an assessment for autism will depend on the age of your child, the reason(s) for a referral, and which service your child has been referred to.

You can read the section on Autism Assessments for more information about being referred for an autism assessment and what it involves.

How do the different diagnostic manuals define autism?

Lots of different terms have been used to describe autism because it affects every person differently. Professionals use diagnostic manuals to define and diagnose autism and some of these manuals use different terms. Two of the most common diagnostic manuals used by professionals to diagnose autism are the DSM-5 and the ICD-10.

DSM-5

In the DSM-5, the terms:

'autistic disorder';
'Asperger disorder';
'childhood disintegrative disorder'; and
'Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)'

have been replaced by the collective term 'Autism Spectrum Disorder'. This means that it is likely that 'Autism Spectrum Disorder' (ASD) will become the most commonly given diagnosis.

The manual defines autism spectrum disorder as "persistent difficulties with social communication and social interaction" and "restricted and repetitive patterns of behaviours, activities or interests", to the extent that these "limit and impair everyday functioning".

ICD-10

The ICD-10 describes a number of autism profiles, including: childhood autism, atypical autism and Asperger syndrome. These profiles are included under the heading of Pervasive Developmental Disorders. These are defined as "a group of disorders characterized by abnormalities in social interactions and
patterns of communication, and by restricted, repetitive interests and activities".

Information from: NHS, National Autistic Society, Autism Speaks

Assessment and screening

0 to four years (pre-school children): if your child is pre school age, your health visitor or GP may carry out a 'screening interview' called M-CHAT (Modified Checklist for Autism in Toddlers). This is just a screening tool and will not give you a diagnosis, but it is a way of indicating
whether your child may be autistic.
Five to 16 years (school-aged children): it can be useful to meet with the school's Special Educational Needs Coordinator (SENCO) or Learning Support Teacher to discuss any concerns you have. Your child's teacher may have also identified behaviours and characteristics and will be able
to offer support in pursuing a diagnosis for your child.

How do I get an assessment for a diagnosis of autism?

Autism varies widely from person to person, so getting a diagnosis can be difficult.

There is not a medical test to diagnose autism, so a diagnosis is best made by a healthcare professional or team who specialise in diagnosing autism.

How to get an assessment for autism will depend on the age of your child, the reason(s) for a referral, and which service your child has been referred to. For example, if your child has difficulties with language, then a Speech and Language Therapist may make the referral. If your child has mental health problems, then Mindworks Surrey (previously CAMHS) may refer them for an assessment and if your child has dyspraxia or has an eating disorder, an Occupational Therapist may make the referral.

These different routes to getting a referral mean that the assessments will be different. For example, some individuals will have a multidisciplinary assessment, some will be diagnosed by a psychologist or psychiatrist within the mental health service and some will have a diagnosis by a paediatrician
with the input from an educational/clinical psychologist.

If you are seeking an autism diagnosis for your child, it is recommended that you follow these steps:

Step 1: Speak to your GP

See your GP or health visitor if your child is showing symptoms of autism spectrum disorder (ASD), or you're worried about their development. If necessary, make an appointment without your child first so you can discuss concerns openly.

Step 2: Gather evidence

You will be asked why you are seeking a referral for an autism assessment, so you will need evidence of why you think your child might be autistic. You could do this by keeping notes on issues such as behaviour, signs of anxiety or social responses.

Step 3: Getting a referral

If appropriate, your GP will refer you to a healthcare professional or team who specialise in diagnosing ASD. Sometimes you will be referred to a multidisciplinary team for an assessment. If you're referred to an individual specialist, they may be a:

psychologist – a healthcare professional with a psychology degree, plus further training and qualifications in psychology
psychiatrist – a medically qualified doctor with further training in psychiatry
paediatrician – a doctor who specialises in treating children
speech and language therapist – a specialist in recognising and treating communication problems.

The specialist or specialist team will make a more in-depth assessment, which should be started within three months of the referral.

Step 4: The diagnostic assessment

Different diagnosticians use different methods to diagnose autism, but in England they should follow the NICE Clinical Guideline 128.

An assessment usually includes:

reports from your child's educational settings (e.g. school, nursery)
an autism-specific developmental and family history
observations in more than one setting
communication, behaviour and mental health assessments
a physical examination
tests and assessments for other conditions where appropriate.

If your child has a multidisciplinary assessment, the professionals will assess your child separately and their findings are then brought together by the team leader to inform the diagnosis. This may mean you need to go for several appointments.

Once all the assessments have been carried out, you will be told whether the professionals think your child is autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.

Step 5: Coming to terms with the diagnosis

After a diagnosis, most individuals and parents are keen to find out as much information as possible. In the Autism: Post Diagnosis Information section, you will find more information about autism and services available to help you answer the 'what next?' questions.

If you are told your child is not autistic, or they are given a diagnosis you don't agree with, you can seek a second opinion. This will require either going back to the GP to explain that you aren't happy with the diagnosis and to ask them to refer your child elsewhere, or paying for a private assessment.

Information from: NHS, National Autistic Society, NAS Surrey Branch, NAPC

Organisations offering advice and support to families

National Autistic Society Surrey Branch is a parent to parent support group providing information, support groups, talks, parent courses and family activities.
Autism Independent UK aim to bring about an increased awareness of autism and improve the quality of life for those with autism and their carers.
Ambitious about Autism offer specialist education and support and can provide specialist training for parents/carers of children with autism.

Autism Post Diagnosis Information

If your child has not yet received an Autism Spectrum Disorder (ASD) diagnosis, but you suspect they may have autism and would like an assessment, you might find it helpful to read the information in our Autism: Pre Diagnosis Information section.

If your child has recently been diagnosed with autism, moving forward can feel daunting and overwhelming. Often, there isn't much time or space to come to terms with the diagnosis and there isn't always information available to explain what happens next and where you can go to access help or support for you and your child.

Included in this section is information about how you can help your child, different treatments, shortlists of services or organisations which offer information, advice and support to you and your child, information about how you can support your child in their education, how to talk about the diagnosis and information about financial support you may be eligible for. You can add and remove the information pages and services that have been shortlisted to create a shortlist which best supports your current needs.

Organisations offering advice and support to families after an autism diagnosis

A Space Autism Services is a social and emotional developmental group for children and young people with a diagnosis of Autism or Asperger's.
National Autistic Society Surrey Branch is a parent-to-parent support group providing information, support groups, talks, parent courses and family activities.

What next? How can I help my child?

It is important to remember that every person diagnosed with autism is unique, and so the best way to help and support them will vary from person-to-person. Moving on from a diagnosis can seem daunting and overwhelming, but there is support available. Once a child has been diagnosed, you can begin to
better understand their needs, arrange the right support and help them to maximise their potential.

Help and support is available at home and school, financially and through social care.

Social interaction

Most people on the autism spectrum have difficulty interacting with others. This may be a difficulty with responding to others when they are approached by them, with initiating interactions, or with using interaction to show people things or to be sociable. This can lead to them becoming socially isolated.

Some ways you can encourage social interaction include the following.

Joining social groups, many of which focus on shared special interests. You can find local social groups on the Directory.
Joining local support groups for autistic individuals.
Circle of Friends this intervention encourages the development of a support network for a child in a structured setting, which can also extend to outside this setting.

Communication

Many autistic children are delayed in their use of language, and some autistic adults don't use speech. Therefore, other methods of communication need to be established.

Some ways you can help an autistic person with communication include the following.

Use role play. Role play can be a great way to show your child appropriate frameworks for social interaction and to explore how things can go wrong/what to avoid.
Reward and praise any spontaneous communication or appropriate behaviours that your child shows you (e.g. "Good sharing"). By rewarding them, you are increasing the likelihood of it happening again. Help the person understand what is said to them – processing information can be difficult for a person
with autism, even if they understand the situation, they may not have processed the words that go with that situation.
Make opportunities for your child to communicate. For example, if they want a biscuit, give them a jar or tin that is difficult to open so that they have to ask for help. Try not to always solve problems for them.
Try to say less, by making your questions short and specific. Speak slowly and repeat your instructions.
Use gestures and visual supports, such as picture cards.

Sensory differences

Many people on the autism spectrum have difficulty processing sensory information. Any of the senses may be over or under sensitive, or both, at different times. These sensory differences can affect behaviour, and can have a profound effect on a person's life.

Adaptations can be made to limit the impact of sensory difficulties.

Sight: If they have under sensitive sight, ways you might help include the use of visual supports or coloured lenses, although there is only very limited research evidence for such lenses. If they have over sensitive sight, you could make changes to the environment such as reducing
fluorescent lighting, providing sunglasses, using blackout curtains, creating a workstation in the classroom.
Sound: If they are under sensitive to sound, you could help by using visual supports to back up verbal information, and ensuring that other people are aware of the under sensitivity so that they can communicate effectively. If they are over sensitive to sound, you could prepare your
child before going to noisy or crowded places and make sure they have ear plugs or ear defenders to block out some of the noise.
Smell: If their sense of smell is under sensitive, you could help by creating a routine around regular washing and using strong-smelling products to distract your child from inappropriate strong-smelling stimuli (like faeces). If they are over sensitive to smell, you could use unscented
detergents or shampoos, avoiding wearing perfume, and making the environment as fragrance free as possible.
Taste: Some autistic people may limit themselves to bland foods or crave very strong-tasting food. As long as someone has enough dietary variety, this isn't necessarily a problem.
Touch: Some ways you can help an individual with under/over-sensitivity to touch is to warn them if you are about to touch them and always approach them from the front, slowly introducing different textures to touch and offering suitable alternatives (e.g. to chew/smear).

Different behaviours

Meltdowns

Many autistic people will experience meltdowns - 'an intense response to overwhelming situations'. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control. This loss of control can be expressed verbally (e.g. shouting, screaming, crying),
physically (e.g. kicking, lashing out, biting) or in both ways.

The NAS Meltdowns page gives suggestions about what to do if someone is having a meltdown, how to anticipate a meltdown, identify the causes and minimise the triggers.

Challenging behaviour

Some people with autism can display challenging behaviour. This is usually considered physically aggressive behaviour, but can also include other behaviours if they are having a negative impact on the person themselves or their family.

See the NAS Behaviour page for details of where you can go to get support and some strategies to try, including: completing a behaviour diary, ensuring everybody in contact with the child is consistent in their approach, speaking clearly
and precisely and using rewards/motivators.

Selective eating

Eating a varied diet is good for your health, but many people don't achieve this. Some autistic people have a restricted diet (eating only a limited range of food), whilst others may over-eat. Always speak to a GP, dietitian or other medical professional for advice and remember that what works for one
person may not work for another.

Ways you can help with diet include: gradually introducing food with new textures and taste, improving the sensory experience (to make sure the environment is not overwhelming), making sure the food is presented in the 'normal way',
changing the volume and variety of food appropriately and maintaining routines.

Anxiety

For many adults and children with autism, anxiety is a common problem and can affect a person psychologically and physically. The NAS guide on anxiety talks about the different ways an individual can manage anxiety, from keeping a diary to learning relaxation techniques and getting support from others in a similar situation.

Obsessions, repetitive behaviour and routines

These can be a source of enjoyment for autistic people and a way of coping with everyday life. But they may also limit people's involvement in other activities and cause distress or anxiety. If the obsessive, repetitive or routine behaviour is causing difficulties, or is unsafe, an individual may need
support to stop or modify the behaviour, or reduce their reliance on it. The NAS suggest different ways you can help to manage repetitive and obsessive behaviours.

Toileting

If your child has autism, the process of developing a toilet routine can take longer and can involve its own particular challenges. The NAS Toileting Guide has lots of useful information and tips.

Sleep problems

For many children with autism, sleeping well can be particularly difficult. Some ways to help improve your child's sleep may include: keeping a sleep diary, establishing a routine, consider changes to diet, use relaxation techniques, make sleep more comfortable and explaining sleep (e.g. through a social
story).

The NAS Sleep and autism guide has more information.

Body awareness

If an individual is under sensitive in their body awareness (i.e. they stand too close to others, find it difficult to avoid obstructions or bump into people), you could position furniture around the edge of the room, put coloured tape on the floor to indicate boundaries and use the 'arms-length rule'
to judge personal space.

If a person is over sensitive in their body awareness (i.e. they have difficulties with fine motor skills and move their whole body to look at something), you could help by offering 'fine motor' activities such as lacing boards.

Information from: Surrey County Council, National Autistic Society

Interventions

There is no 'cure' for Autism Spectrum Disorder (ASD), but there are a range of specialist educational and behavioural programmes available to support individuals with autism. It is important to remember that every person diagnosed with autism is unique and so the best support or intervention will vary
from person-to-person.

There are many types of intervention for ASD. Some interventions are designed to address the core features of autism (difficulties with social communication and social interaction and restricted, repetitive patterns of behaviour or interests). Other interventions are designed to address other issues
associated with autism (such as anxiety, aggression or self harm).

Some interventions can be quite simple and straightforward, others may be more complex, requiring a team of specialists and/or expensive materials. It can be difficult to know which intervention is best; the National Autistic Society (NAS) offer advice and guidance about choosing an approach.

What support options are available?

The NAS offer support to autistic children, families and adults to help them gain independence and live a fulfilling life, through their services in Surrey; from round-the-clock care in residential homes, to kids' clubs or activities for adults through their daytime hubs. Visit their website to find out about Surrey Services.

Some support options that are available are listed below.

Psychological support
These are offered in cases where a child with ASD also has a mental health problem (such as anxiety). Psychological treatments, such as Cognitive Behavioural Therapy (CBT),
involve talking about thoughts and feelings, and discussing how these affect behaviour and wellbeing.
Medication
In some cases, medication may be prescribed to treat some of the symptoms or conditions associated with autism. For example, with sleeping problems, depression, epilepsy and ADHD.
Behavioural interventions
These interventions are designed to encourage appropriate behaviour (such as getting dressed or talking to other people) and to discourage inappropriate behaviour (such as self harm or aggression towards others). Therapists, teachers and/or parents break
down the desired behaviours into small, achievable tasks which are then taught in a very structured manner.
Developmental interventions
These interventions are designed to target the core difficulties an individual experiences, rather than on their behaviour. For example, therapists and/or parents work with the child to slowly build engagement, interaction, communication and affection.
Motor/Sensory Interventions
Motor interventions aim to improve motor functioning (i.e. movement of the whole body or parts of the body) and sensory interventions aim to improve the sensitivity to one or more of the senses.
Augmentative and Alternative Communication (AAC)
is any form of communication that people use if they are unable or unwilling to use standard forms of communication, such as speech. Alternative communication systems are designed to replace standard means of communication. Augmentative
communication systems are designed to complement and enhance standard means of communication.
Assistive and Adaptive Technology
This refers to any equipment that is used to maintain, increase or improve the individual's ability to function.
Other Interventions
There are other forms of intervention which individuals with autism benefit from. These may include: animal therapies, relationship-based interventions, and social communication interventions. There may also be local programmes available to support individuals
(particularly post 16/adults) with social learning, leisure and skills for daily living.

What professionals can help me/my child?

If you have a SEND Case Officer, you can contact the local SEND team directly for support or advice.

You may meet a number of professionals in the course of getting a diagnosis and after. Below is a brief description of what some of the professionals you meet do.

Brokers can help people and families to plan and make choices about the support they need.
Mindworks Surrey (previously CAMHS) offer assessment and support when an individual has emotional, behavioural or mental health difficulties.
Clinical psychologists look at the function of an individual's behaviour and may introduce a behaviour management plan.
Educational psychologists they carry out assessments about a child's learning profile and needs in educational settings.
GPs (family doctor) can make referrals to relevant professionals for you.
Health visitors are specially-trained nurses responsible for the health and development of pre school aged children.
Occupational Therapists help with therapeutic techniques, identify sensory sensitivities, make changes to the individual's environment, and suggest specialist equipment to help an individual carry out everyday activities.
Paediatricians are experts in the health and development of children, particularly those with developmental disabilities. Paediatricians are often involved in the initial diagnosis of autism and sometimes offer follow-up support.
Psychiatrists are often involved where there are behavioural issues or mental health difficulties, and are able to prescribe and monitor medication.
SENCOs (Special Educational Needs Coordinator) the teacher in a school or nursery with day to day responsibility for Special Educational Needs (SEN).
Speech and language therapists (SLT) assess speech, language and communication abilities. They may also be involved in implementing alternative communication systems.

Information from: NHS, Research Autism, National Autistic Society

Where can I go to access help and support for my child?

0 to 15 years (pre school and school aged children)

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who is under 16 or who needs more looking after than a child of the same age who doesn't have a disability. They will need to meet
all the eligibility requirements.
If you are claiming DLA for your child, you may be able to claim additional support through Universal Credit.
School transport

For more information, the NAS website has lots of information about the benefits available for autistic children.

Post 16 and adults

Benefit entitlement changes when a child turns 16 and again when a young person leaves education. One of the most important changes is the switch from children's to adults' benefits. This happens between the ages of 16 and 20 depending on your circumstances.

Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you're aged 16 to 64.
Disabled Students Allowance is offered to higher education students who have a long-term health condition, mental health condition or specific learning difficulty, eg dyslexia.
Universal Credit (UC) is a means-tested benefit for people between 18 and pension age who have a low income or no income, and whose savings are below £16,000. It is for people in work,
people looking for work and people who cannot work due to their condition or disability.

For more information, the NAS website has lots of information about the benefits available to young autistic people (aged 16 to 20) and for autistic adults.

Parents/ carers

Carer's Allowance if you are awarded DLA for your child, you may also be able to claim Carer's Allowance for yourself. You could receive additional financial support each week if you care for someone at least 35 hours a week, and they get certain benefits.
Carers Trust has information about grants and discounts that may be available to help carers who might need extra help to pay for something for themselves or the person they care for.
Universal Credit (UC) is a means-tested benefit for people between 18 and pension age who have a low income or no income, and whose savings are below £16,000. It is for people in work,
people looking for work and people who cannot work due to their condition or disability. If you are eligible to receive Universal Credit and you are caring for a disabled child, a severely disabled child or a severely disabled adult, then you may be able to get an extra amount because of your caring role.
GP Carer Breaks Payments are one-off payments authorised by a carer's doctor (GP) in order to provide them with a respite from their caring role.
Parent Carer Breaks Grants are payments made to support parents who have a disabled child under 18 living in Surrey, who are not currently receiving services from Surrey County Council children's services/don't
have a social worker.

For more information, the Gov.uk website gives details of the different sources of help available if you have a disabled child. This includes: short break services, holiday play schemes, care at home, some aids and adaptations and financial help.

Information from: National Autistic Society, Surrey Family Information Service, Gov.uk

Where can I go for parent/carer help and support?

If you are the parent/carer of a child with autism, particularly just after your child is diagnosed, life can feel a real challenge on some days. Getting support for yourself is really important and there are different ways you can find this.

Local Support Groups

The National Autistic Society Surrey Branch is run by parent-volunteers and has a number of support groups for parents/carers.
There are also a number of Surrey family support groups run by parents and carers who have children with autism and SEN.

Services available to support parents/carers of children with autism

The National Autistic Society's (NAS) Autism Family Support Service provides information, advice and support to the parents and carers of children and young people with autism in Surrey.
The NAS also offer a Parent to Parent confidential telephone support service.
Positive Autism Support and Training (PAST) offer training and provide support services to families who have children with autism and associated conditions.

Short breaks/ respite

Surrey Short Breaks for Disabled Children funds voluntary organisations and SEND schools to provide short break services, including after school clubs, holiday schemes, home-care and more.
GP Carer Breaks Payments are one off payments authorised by a carer's doctor (GP) in order to provide them with a respite from their caring role.
Parent Carer Breaks Grants are payments made to support parents who have a disabled child under 18 living in Surrey, who are not currently receiving services from Surrey County Council children's services / don't have a social worker.

Courses for parenting a child with autism

Child Autism UK (formally, PEACH) offer ABA training sessions to parents to show them how to teach their child, manage behaviour and track progress.
Positive Autism Support and Training (PAST) offer training to parents who have children with ASD on topics including communication, behaviour, sensory issues, and support strategies.

Support for your family

Sibs understand that a diagnosis of autism impacts the whole family, not just the individual. They aim to enhance the lives of siblings by providing them with information and support.
Positive Autism Support and Training (PAST) also offer one-to-one support, small group training sessions and support to siblings of an autistic child.

How can I support my child in their learning, education and/or employment?

Autism is a spectrum condition, which means that people with autism will have certain difficulties, but being autistic will affect them in different ways. Each individual with autism is unique which means that every person with autism will need different levels of support with their learning, education and employment.

0 to four years (pre-school aged children)

Extra help in the early years setting if your child has been identified as having Special Educational Needs (SEN), the nursery should take action to put support in place. You must be told about any provision put in place for your child.

Specialist early education service, which includes Portage and Local Early Autism Programme (LEAP), offer specialist programmes for families with a child (aged up to three and a half years) who have been diagnosed with ASD.

Transition is particularly important for children with autism to have a period of transition when they move classes and school. Ways you can help with the transition between early education and starting school include: planning visits and phased entry, visual supports and social stories. Information about your child's needs should be passed onto the child's new school so that they can be prepared for when your child starts.

Five to 16 years (school aged children)

The right form of education can make a real difference for children and young people on the autism spectrum, whether that's at a specialist school, in a mainstream setting or at home.

As a parent, it's important to be aware of the schooling options which may be available to your child. Our Finding and applying for a school page gives information about applying for a school place in Surrey.

Whilst young people are expected to participate in education or training until the age of 18, this does not mean that they have to stay at school or college. Other options include supported internships, traineeships, apprenticeships, supported living, employment or volunteering with training and study programmes at a school or college which may be more appropriate. You can find out more about the different choices for post-16 education and training provision on our Support to help young people move into adulthood page.

Extra help at school/further education once your child has been identified as having SEN, the school should take action to put support in place. You must be told about any special educational provision put in place for your child. If your child makes little or no progress following interventions and support, the school should consider involving specialists from outside agencies.

You, or your child's school, may feel it is appropriate to apply for an Education, Health and Care (EHC) plan, this describes a child's Special Educational Needs and their aims for the future. It details what support is needed to meet these.

Further education colleges and sixth form colleges must ensure that young people with SEN have access to a range of study programmes and support. Where available, colleges should use information from your child's previous school about their SEN but they may also want to undertake their own assessments.

Transition, moving between different stages of life, such as school and college, can be particularly hard for autistic people. Ways you can help with the transition between education settings include: planning visits and phased entry, visual supports and social stories. If your child is starting secondary school or changing school, any information about their educational needs gathered by their previous school should be passed on to the new school.

The National Autistic Society also have lots of information and guidance on how to support your child in education, including difficulties at break times, school absence and exclusion.

Post 16/ adults

There are different options available for young people with autism after they have finished compulsory education, including further education or finding employment.

Extra support in higher education - many young people with autism progress to higher education, however it is not possible to have an EHC plan at university. If a young person with an EHC plan has a confirmed higher education place, with their permission, Surrey County Council will pass a copy of the EHC plan to the relevant institution and to the assessor for Disabled Students Allowance.

Transition - it's important that autistic students and their families are involved in the transition planning early to make sure that the support is appropriate. Planning should be person-centred, focusing on what the student wants for their future and what matters to them. Many autistic people have intense and highly-focused interests. Some can channel their interests into studying, paid work, volunteering, or other meaningful occupation. You can find more information on our support to help young people move into adulthood page, including finding somewhere to live and moving between children's and adult's social care services.

Information from: National Autistic Society, Network Autism, Surrey SEND

Talking about an ASD diagnosis

An autism diagnosis can be difficult to come to terms with. You may be coping with a condition you know very little about and trying to find new ways for everyone to live together and feel supported. Many parents aren't given any guidance on what to do next, who to talk to and the impact it will have,
so moving on from a diagnosis can seem daunting.

Talking to your child about their diagnosis

If your child has recently been diagnosed with autism, it is your decision about when and how you tell them. You may want to ask your child's school or a specialist psychologist to support you with this. The National Autistic Society have a number of resources which might be helpful.

Parents and carers need to consider how their child will react. Some children may be pleased that they now have a better understanding of themselves, but others may be worried that there is something wrong with them, so you may need to emphasise that autism is not a disease and no one can die from it.

It is important that you are there if your child wants to talk or ask questions. Some children may not want to ask questions face to face, so having a question box, diary or email system can make it easier for some children to ask personal questions and gives them more time to think about your answer
or to think of more questions.

Talking to siblings about a diagnosis

If you have other children you may want to talk to them separately about your child's diagnosis. You will probably explain things differently depending on their ages. The National Autistic Society has more information to help siblings understand autism.

Talking to others about a diagnosis

Many parents report that they benefit from talking to and spending time with other parents in a similar situation (i.e. who have children with ASD and/or have recently received a diagnosis); this may be through local support groups or online forums and communities.

Information from: NHS, National Autistic Society

What financial support is available?

0-15 years (Pre school and School-aged children)

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who is under 16 or who needs more looking after than a child of the same age who doesn't have a disability. They will need to meet all the eligibility requirements.
Disabled Child Element of Child Tax Credit. If you are claiming DLA for your child, you may be able to claim additional support through the disabled child element of Child Tax Credit.

For more information, the NAS website has lots of information about the benefits available for autistic children.

Post-16/ Adults

Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you're aged 16 to 64.
Disabled Students Allowance is offered to higher education students who have a long-term health condition, mental health condition or specific learning difficulty, eg dyslexia.
Universal Credit (UC) is a means-tested benefit for people who have a low income or no income and whose savings are below £16,000. It is for people aged between 18 and pension credit age, including people who are carers, parents, people in work, people looking for work and people who cannot work due to their condition or disability.

For more information, the NAS website has lots of information about the benefits available to young autistic people (aged 16-20) and for autistic adults.

Parents/ Carers

Carer's Allowance - If you are awarded DLA for your child, you may also be able to claim Carers Allowance for yourself. You could receive additional financial support each week if you care for someone at least 35 hours a week and they get certain benefits.
Carers Trust - provides information about grants, funds, and charities that may be able to help if you or the person you care for require extra help to pay for something.
Universal Credit (UC) is a means-tested benefit for people who have a low income or no income and whose savings are below £16,000. If you qualify for Universal Credit and care for a disabled child, severely disabled child or a severely disabled adult for more than 35 hours a week, then you may be entitled to an additional payment. National money advice charity Turn2us has a guide to the additional element of Universal Credit on their website.
GP Carer Breaks Payments are one-off payments authorised by a carer's doctor (GP) in order to provide them with a respite from their caring role.
Parent Carer Breaks Grants are payments made to support parents who have a disabled child under 18 living in Surrey, who are not currently receiving services from Surrey County Council children's services/don't have a social worker.

For more information, the Gov.uk website gives details of the different sources of help that are available if you have a disabled child. This includes short break services, holiday play schemes, care at home, some aids and adaptations and financial help.