Autism
Autism is a lifelong developmental condition that affects the way that individuals communicate with and relate to other people and how they make sense of the world around them. Like everyone, those with autism have their own strengths, differences and needs.
You can find out about the diagnosis pathway if you think your child may be autistic.
A spectrum condition
While all autistic people share certain challenges, some autistic people will need very little or no support in their everyday lives while others may need high levels of care, such as 24-hour support in residential care. Some people may need help with a range of things, from forming friendships, coping at school, managing at work, or being able to get out and about in the community. This variation in the condition is why it is sometimes referred to as a 'spectrum condition'.
Not all autistic people see themselves as disabled but some do. A person is described as disabled under the Equality Act 2010 if they have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities. Some autistic people might find their autism does not affect them in this way, but many do. Autistic people often see autism as part of who they are rather than something separate and prefer to be described as 'autistic' rather than 'someone with autism'.
This video from National Autistic Society explains what autism is and how autistic children and young people see the world.
You can find out more about autism, including information about the difficulties autistic people may have, on the National Autistic Society website.
Advice and support
A range of support is available for children and young people with autism:
- Children with autism 0-4 years old
- School age children with autism (5-16)
- Support for young people with complex autism and/or learning difficulties
- Local and national support
All-Age Autism Strategy
Herefordshire and Worcestershire's Autism Partnership Boards have worked with autistic people, carers, professionals from social care, health, public health, police, support providers and advocacy services to co-produce a new All-Age Autism Strategy for the two counties.
What to do if you think your child might be autistic
Receiving support at the earliest stage without the need for a diagnosis is really important to help you and your child. If you think your child may be autistic, talk to a health, education or social care professional. They can help you consider if your child might be showing signs of autism. These are different from one person to another but may include the following:
- Difficulties with social communication
- Difficulties with social interaction
- Restrictive and repetitive interests and behaviours
- Difficulties in daily life or disturbances in daily functions due to the above
- Heightened sensory interest or sensory awareness
- Other difficulties such as sensory processing and co-ordination difficulties
- Difficulties in learning, information processing and other behaviours may be apparent
Although a child with autism may show difficulties in these areas, it is important to be aware that these may also be as a result of other underlying causes such as emotional, developmental or medical conditions. These would be considered during an assessment and may need to be referred to other specialist teams for exploration.
The professional should work with you to think about and put in place adjustments or strategies to help meet the needs of your child. These are made as part of a graduated response of support and are a combination of adjustments made between nursery or school and home to help in daily life. What this looks like is different for every young person. It may also include onward referral to services for assessment or support. This will be agreed as an individual plan for your child.
Help for parent carers
Parenting can be challenging, and when your child has additional needs, it's especially important to take care of yourself so you can best support them. Navigating the complexities of their needs can be overwhelming, especially while waiting for appointments or guidance. To help during this time, there are online resources, workshops, and parent support groups available that provide valuable tools and insights. To help support parent and carers the resources on the Local Offer and parenting workshops cover subjects other parents have found useful.
How a child/young person is referred for a diagnostic assessment
A referral can be made for an Autism diagnostic assessment by a GP, school, nursery, health visitor or school nurse or other health professional. In Herefordshire there are currently two services providing Autism assessments:
Children's Development Centre (CDC) for children aged under 10 years
Children aged 0-9 years can be referred to Herefordshire Children's Development Centre.
Making a referral to the CDC
It is not unusual for children to present differently at home and at nursery or school. To understand this, the assessment team find it helpful to have information at the beginning of the assessment or time of referral.
A referral form must be completed and for school age children a questionnaire will be sent to school and to parents/carers. The questionnaires may be requested before or after your first appointment, but your consent will be requested to contact school for their observations.
Where a child/young person does not attend an education setting, it is useful but not essential, to get a report from another setting your child attends , for example an activity or sports club. Your consent will be requested to do this.
Further information about how to make a referral to the CDC.
Child and Adolescent Mental Health Services (CAMHS) for young people aged 10-17 years
Young people aged 10-17 years and 6 months should be referred for diagnostic assessment to Herefordshire Child and Adolescent Mental Health Services (CAMHS). For practical purposes, referrals for those over 16 will be considered in terms of whether assessment by an adult service may be more appropriate.
Making a referral to CAMHS
CAMHS require that a parent and school screening questionnaire is completed as part of all autism assessment referrals.
Referrals must also provide detailed examples of the young person's behaviours and experiences that are thought may be signs of a neurodevelopmental difference. We ask that this information is provided from at least two settings that must include home and school. We ask for evidence from these two settings as a minimum because it is helpful in differentiating a neurodevelopmental conditions' impact on behaviour from other factors present in either environment.
Referrals that do not provide all the requested information will be declined.
Where the young person does not attend school, CAMHS will advise on how information can be obtained through another appropriate setting to enable a full assessment.
Further information about how to make a referral to CAMHS.
What happens next
The referral information provided will be reviewed by a doctor and multi-disciplinary team and a decision will be made to either accept or reject the referral. Further information may be requested to support the referral. If the referral is accepted you will be offered an appointment.
Initial appointment
At the first appointment your child's difficulties will be discussed and an initial assessment undertaken. It will be decided at this appointment if further assessment is indicated to understand your child's difficulties and needs better. These assessments would be tailored to your child's needs. If your child is of school age this may include a Speech and Language Therapy assessment, Educational Psychology assessment and include a visit to observe your child in school. This will be discussed with you in the appointment.
If your child is not yet of school age, the assessment process will be discussed with you at the appointment.
If your child has a full assessment for possible autism, the outcome will be given to you once the assessment has been completed. It may be that your child is given a diagnosis of autism or may not; sometimes the assessment is inconclusive. An alternative explanation or diagnosis for your child's difficulties may also be given.
Feedback of diagnostic assessment
Both CDC and CAMHS will provide a written document detailing the outcome of the diagnostic assessment. They will also provide appropriate sign-posting information.
Waiting times
The CDC Team and CAMHS understands that everyone wishes to be seen as soon as possible and it can be difficult to wait for appointment without an idea of timescale. Due to extremely high demands on the service, it is currently difficult to outline exact waiting times for your child's initial appointment. Please be reassured that your child will be offered an appointment as soon as one becomes available. NHS Herefordshire and Worcestershire are working with the team to bring down waiting times and provide useful information while you wait.
Choosing a different provider
In England under the NHS you now have a legal right to choose a different provider of autism and ADHD assessments, this is called Patient Choice and sometimes Right to Choose. This means that, should you decide the waiting time for your assessment is too long, then you can choose to leave the NHS waiting list and go to an alternative provider. The provider must supply the service to the NHS somewhere in England. Your GP can tell you which providers are able to offer Patient Choice assessments and refer you. NHS Herefordshire and Worcestershire are developing a list of quality-assured Patient Choice providers. The link to this list will be added shortly. In the meantime, these are some of the providers of Right to Choose assessments for autism and ADHD.