What is autism?
Like a learning disability, autism is a lifelong condition. Autism is sometimes referred to as a spectrum, or autism spectrum disorder (ASD). Autism is not a learning disability, but around half of people with autism may also have a learning disability.
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Autism is more than just a diagnosis or definition, hear from Jack about what having autism means to him.
Autism is often referred to as ASD or autism spectrum disorder.
There are three common features of autism, which might affect the way a person:
- interacts with others in a social situation
- is able to communicate with others
- experiences the world around them.
What is Asperger's syndrome?
Asperger's syndrome is a form of autism which may also affect the way a person communicates and relates to other people.
People with Asperger's syndrome may experience challenges such as specific learning difficulties, anxiety or other conditions. However, people with Asperger's syndrome will not have a learning disability, as they will have an average or above average intelligence.
What is Pathological Demand Avoidance (PDA)?
Pathological Demand Avoidance (PDA) is a form of autism which may also affect they way a person communicates and relates to other people.
People with PDA may experience challenges such as specific learning difficulties, but their central difficulty is that they are driven to avoid everyday demands and expectations to an extreme extent. This avoidance is rooted in an anxiety-based need to be in control.
Mencap’s online community is a safe and supportive place to meet others, ask questions about learning disability, share experiences and offer support.
Signs of autism
The signs of autism will be different for everyone, and affect different people in different ways in different environments (they are dimensional), but you might notice some of the following if your child has autism:
- difficulty interpreting verbal and non-verbal language
- difficulty 'reading' other people and expressing their own emotions
- sensory sensitivity and highly focussed interests
- repetitive behaviour and routines
- behaviour that challenges, such as episodes of frustration or in some cases violent behaviour.
This is not a full list, so contact your GP if you have concerns.
Diagnosing autism & Asperger's
Diagnosis can be a very emotional time, and getting help from family, friends and professionals is really important to help you through the process.
Many parents have mixed feelings about the process of diagnosis, and everyone's experiences will be different.
It's also important to remember that, although there is no ‘cure', getting a diagnosis can be the first step towards making sure your son or daughter will get the support they need to make the most out of life.
When do you notice the signs of autism?
While you might notice some of the signs of autism in the first few years of your child's life, it may only be when they are at school, or even when they are an adult, that a diagnosis is made.
Sometimes an autism diagnosis is delayed because health professionals want to be certain before they make a diagnosis. In other cases, a delayed diagnosis might be because the signs of autism go undetected, especially if they present in a more subtle way (often the case with girls/women, and those with a PDA profile).
More boys than girls are diagnosed with autism, and there is an ongoing debate about whether this is for genetic reasons or because the process of diagnosis tends to pick up autistic traits more common in boys, and the possibility that this is leaving some girls undiagnosed.
If you think your son or daughter has autism, you should talk to your GP or health visitor about your concerns. You can also ask to be referred to another relevant healthcare professional. This could be a psychologist or psychiatrist or, if your child is young, a paediatrician or Child Development Centre (CDC).
If your child is at school, you could speak to their teacher or to the school's special educational needs coordinator (SENCO) for advice and how to get the right support. Any other professionals working with your child, for example a speech and language therapist or educational psychologist, may also be a good source of advice.
It's a good idea to keep a diary of your child's behaviour and habits which you can show to any professionals you meet. Write down when it happened, what they were doing, the environment they were in at the time and anything notable that happened just before the event took place.
Finding help and support
Each person with autism is different, and the impact their condition has on their life will depend on many factors. These will include the severity of their condition, any additional diagnoses, such as a learning disability or a mental health problem, and whether they display any challenging behaviours.
While some people with autism will need very little extra support, others will need more specialist, even 24 hour, help. Each person with autism is also an individual in their own right, and will have their own likes, dislikes and characteristics just like everyone else, which will also affect the kind of support they want and need. Support and coping strategies need to be tailored to each individual.
For some parents, planning ahead for the future is key, while other families prefer to take life a day at a time. There is no right or wrong way of doing things, the key is to work out what works for your son or daughter, and to help them achieve the things they want from life.
Once your son or daughter has received a diagnosis, the next step is to think about the services and support your family will need for the future.
Mencap can offer information, advice and services to people with a diagnosis of autism and learning disability.
- For information and advice about autism and learning disability, contact our Learning Disability Helpline.
- Find out more about Mencap's services and the support they can offer, or search for a local group near you.
- For autism support, visit The National Autistic Society's About Autism pages.
- Call the Autism Helpline which is available on 0808 800 4104 from 10am-4pm, Monday-Thursday, and 9am-3pm, Friday.
- For Pathological Demand Avoidance (PDA), contact the PDA Society.
- The Challenging Behaviour Foundation (CBF) can also offer support and advice if your son or daughter displays challenging behaviours. Visit the CBF website or call their family support line on 0845 602 7885.
- Getting support for the rest of the family is also important. SIBS can help brothers and sisters to come to terms with their sibling's disability. Visit the SIBS website or call 01535 645453.
The Learning Disability Helpline is our free help and advice line.
Our team can offer advice, information and discuss what support Mencap can offer tailored to your needs, in your area.