Autism spectrum condition

Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.

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What is autism

Each person with autism will be affected differently, hence autism is known as Autism Spectrum Condition (ASC). Some individuals with autism will live relatively independent lives, whilst others may have additional learning difficulties that require long-term specialist support.

The main areas of difficulty or differences for those with autism are:

  • social communication and social interaction
  • restrictive and repetitive behaviours
  • highly focused interests or hobbies
  • information processing
  • sensory integration (over-or-under sensitivity)

You can read more about Autism on the National Autistic Society website.  

If you are a parent and something is bothering you about the way your child is behaving, or if their behaviour seems very different from the way other children of a similar age behave, write down or record your observations. That way you can remember exactly what you saw or felt, and you’ll be able to tell whether what you saw gets better or worse. These notes will also help you remember what your concerns are if your child is referred for assessment.

If you are still concerned, you can talk to your GP, health visitor or school. Carefully explain what you have observed. A practitioner like a GP or health visitor may be able to calm your fears quickly or refer your child for an assessment. You can also speak to the education setting or school about your concerns and they will be able to share their observations.

A person with autism could be displaying difficulties or differences with:

  • their speech development
  • responding to others, physically or verbally – they may need extra time to process information
  • interacting or playing
  • their behaviour - they may become overwhelmed, dysregulated and display distressed behaviours that you find very challenging
  • sensory differences - they may be over-or-under sensitive to one or more senses e.g.  touch, sound, smell, taste, colours or light.

The above is only a brief overview, as those on the autistic spectrum are all very individual in how they are affected.

It is not clear what causes autism, or if it has a cause. It can affect people in the same family, so it may sometimes be passed on to a child by their parents.

Autism is not caused by:

  • bad parenting
  • vaccines, such as the MMR vaccine
  • diet
  • an infection you can spread to other people

Other names for autism

Autism Spectrum Condition (ASC) or Autism Spectrum Disorder (ASD) or Autism all refer to the same condition.

Asperger’s syndrome is part of the autistic spectrum and those with Asperger’s syndrome are known to have fewer problems with speaking and can be of average or above-average intelligence. Clinicians no longer diagnose people with Asperger's syndrome but if you were diagnosed with it before, this will stay as your diagnosis.

You can read more about Asperger’s on the National Autistic Society website

Autistic people with a demand avoidant profile can appear to have better social understanding and communication skills than others on the autism spectrum, however what underlies their demand avoidance is severe anxiety and they will need help and support to reduce their anxiety. They do  not really have as good an understanding of social matters as would initially be apparent.

The distinctive features of a demand avoidant profile in autism include:

  • resisting and avoiding the ordinary demands of life
  • using social strategies as part of avoidance, e.g. distracting, giving excuses
  • appearing sociable, but lacking understanding
  • experiencing excessive mood swings and impulsivity
  • appearing comfortable in role play and make-believe situations
  • displaying obsessive behaviour that is often focused on other people.  

People with this profile can appear controlling and dominating however this is because they feel anxious. However, they can also be enigmatic and charming when they feel secure and in control. It is important to acknowledge that these people have a hidden disability.

Demand avoidance is a part of autism and cannot be diagnosed separately. It can be seen in any condition and is related to significant anxiety. Demand avoidance can be helped if anxiety is reduced.

The local position statement for demand avoidant profile can be found in the downloads section of this page. 

Further information on Pathological Demand Avoidance (PDA) is available on the National Autistic Society website.

Girls with Autism 

Are girls less likely to be diagnosed with autism than boys?

More boys and men are currently diagnosed as autistic than girls. It was previously thought that autism was a condition that primarily affected boys, this is changing slowly but surely, as more girls and women are being diagnosed as autistic, however girls can often be diagnosed much later than boys as their symptoms can be subtle.

Also, the signs of autism in girls and women - particularly in cases of high-functioning autism - are not the same as those in boys and men: girls may have fewer restricted interests and repetitive behaviours than boys do, and they may have more socially acceptable types of interests. It has also been reported that frequently autistic girls are more likely to mask their autism. 

Seeking advice or referral for assessment

Children and young people 

If you are concerned about autism, please contact your Special Educational Needs Coordinator (SENCo), child’s teacher or social worker if you have one. They may be able to offer advice and support. The Sirona care & health website also has advice and signposting information, which includes how you can support your child.

The Specialist Autism Assessment Service accepts referrals for children and young people aged between two years four months to the 17 years and six months, who are registered with a GP in Bristol, North Somerset, or South Gloucestershire. Referrals are for children and young people who are experiencing very significant difficulties associated with suspected autism as outlined in the referral criteria.  When a young person reaches the age of 17 years 6 months, they will be transferred onto the waiting list for the adult service. 

You can make referrals in partnership with someone that knows the child well such as the child’s SENCo (Special Educational Needs Coordinator), health professionals or you can refer yourself. GPs may be involved if the child or young person is not in education, or if the GP has valuable information which will contribute to the referral. Supporting information from the child or young person’s family and educational setting is required.

There is currently a very long waiting list for an assessment because of high demand and children and young people should be supported as soon as a need is recognised. A diagnosis is not needed for educational support and funding.

An assessment will be made through detailed discussion of history, examination and observations by a team of professionals such as paediatricians, speech and language therapists, occupational therapists and specialist nurses and practitioners. More information about autism can be found on the Sirona care & health website. This tells you who can make the referral and what information and evidence is needed. This also has information about the forms needed for the assessment process.    

For adults 

For adults, all referrals for assessment will go to Bristol Autism Spectrum Service (BASS) for adults managed by Avon Wiltshire Partnership. BASS will assess and diagnose people who are referred to by their GP but can also provide post-diagnostic support, advice and training. 

Training and support for parents of children with autism

If your child is under 5 years old and has been diagnosed with autism, the team who diagnosed your child will ask if you would like to be added to the waiting list for the NAS Early Bird programme. 

You will be contacted when a space is available.  Early Bird is a parent support programme for families of children under the age of 5 with a diagnosis of autism. Designed by the National Autistic Society (NAS) the programme is delivered by Early Bird trainers over 3 months. 

Further details about the Early Bird programme are available on the NAS website.  

South Gloucestershire playscheme provide the Barnardo’s Cygnet programme for parents with children aged 5-18 with Autism. Their website provides details on how you can book onto the programme.   

You can find further information about local support and training for parents by reading Support for Parent Carers

You can find further information about autism resources to support you in our Autism resources article. This article also includes information about training for service providers in South Gloucestershire.

South Glos Parent Carers the local parent carer forum is working with Bristol and North Somerset Parent forums to deliver workshops to families who think their children may have Autism or are currently on a waiting list for assessment. Sign up to their database to hear when the workshops are available.  

SEND And You SENDIAS service delivers information, advice and support about special educational needs and disability (SEND) in South Gloucestershire. Their service is free, confidential and impartial, and is available to parents and carers with children and young people who may have SEND, diagnosed or undiagnosed. Children and Young People can also contact SEND And You independently from their parents and carers.

Contact details for SEND And You:

  • webpage contact form 
  • 24 hour answerphone and support line: 01179897725
  • email support@sendandyou.org.uk
  • for people with English as an Additional Language:a ReachDeck translation resource is available to access their website.

There are also a range of resources provided by SEND and You available on their website

How South Gloucestershire Council and its partners are improving support for autism

South Gloucestershire autism planning group

The South Gloucestershire autism planning group (APG) is a multi- professional group with carer and user representation that meets on a bi-monthly basis with the aim of reviewing and considering national and local guidance and policy relating to adults with autism.

The group also oversees the development of a long-term strategy to improve local support for people with autism. The group supports the development of services for people with autism and works with other providers to ensure that non-specialist services are accessible for people with autism.

Local Autism Group for Children and Young People

This is a multi-professional group which meets quarterly and includes representation from parents/carers, managers, commissioners and clinicians. The key aim of the group is to co-ordinate and collaborate regarding services and interventions to enable the needs of children and young people with ASD and their families to be met across South Gloucestershire.

Further information and support

You can search for local organisations; support groups, community groups, events and activities that can help improve your health and wellbeing on our directory.  

Mind You website has local information about Autistic spectrum disorder (ASD).

The National Autistic Society has a lot of information that will help to understand the behaviour of autistic people and what causes that behaviour. They also have information about autistic girls and women

NHS choices explains about many conditions including autism in their What is autism? article.

South Gloucestershire has autism toolkits for Early Years, Primary Schools  and Secondary Schools. These were designed for schools, but parents and carers will also find the information and strategies useful.

The government’s ‘Think Autism’ adult strategy and supporting information is available to read on Gov.UK.

Autism Education Trust (AET)  has information, advice, training and resources for those involved in educating autistic children and young people.

South Gloucestershire has an Autism Education Trust hub which is run by Integra. The Hub runs extensive autism training for Early Years, Schools and Post 16 provisions. Some of this training is free. Please contact claire.phillips@southglos.gov.uk for more information.

South West National Network of Parent Carer Forums have produced a booklet for parents on admission avoidance.  The guide provides information on how to avoid mental health admissions for young people with autism and/or a learning disability.