What is it?
Autistic Spectrum Condition (ASC) or as it is commonly known as Autistic Spectrum Disorder (ASD) is a lifelong neurological developmental condition. It affects the way people communicate and interact with each other and how they interpret the world around them.
It’s impact on an individual can be wide ranging. Thus there is no such thing as a typical autistic child or adult. There are those who can do very well with the right support from family, school and employment, go on to form relationships and have families of their own. There are some that have an associated learning disability, are profoundly affected and will need lifelong specialist care.
Autism is referred to as a spectrum condition to reflect the vast array of people living with the condition.
What are the characteristics of autism?
Someone with an autistic spectrum condition will have varying levels of difficulty with social interaction. They may appear aloof, disinterested or may be very sociable but with an unusual manner. They will often show difficulties in developing and maintaining friendships.
Understanding the subtleties of verbal and non-verbal communication poses a challenge and their language may be precocious, awkward, limited or possibly nonexistent. Someone with autism will also have difficulty with predicting how someone thinks and feels, understanding other people’s perspectives and responding in an appropriate manner.
People on the autistic spectrum also see the world differently, they may have unusual sensory responses, have a dislike of change and develop a dependency on routines. It is common to have narrow and intense interests (which can be used successfully to motivate, to calm and even as a future career). They may display repetitive movements or show repetitive patterns of behaviour.
Autism is often associated with a ‘spiky profile’ – there are things the individual can do exceptionally well and areas where they really struggle. It is important to recognise that some people learn coping strategies to mask their traits and for some the condition is very much a ‘hidden disability.’ The cost of trying to ‘fit in’ can be a high one with exhaustion and difficulties with mental health being the more visible signs of their struggle.
How many people have autism?
Approximately just over 1% of the UK population, that is 700,000 people are currently diagnosed with an autistic spectrum condition. However, many people, usually the ‘more able’ ones and especially females remain undiagnosed or are comfortable with their self-diagnosis. Therefore experts believe the actual figure is significantly higher than 1%.
If you include their families, autism affects the lives of 2.8 million people in the UK every day.
Some myths surrounding autism:
“Autism is on the rise” – Autism has always been around, but better diagnosis is on the rise. For many years, autism was also considered to be a condition you either had or you didn’t and if you did, it had to be accompanied with severe learning difficulties and communication impairments. The diagnostic criteria have therefore changed over the years to reflect that it is a spectrum condition and to include those that are more able but who show the same inherent difficulties. Research over the last decade or so has also brought to light how differently the condition can present itself in, and more girls and women are now being assessed too which also contributes to the increasing apparent prevalence.
“He/she can make eye contact, does this mean that he/she does not have autism?” – Not at all, lack of eye contact is not a mandatory diagnostic criterion. One of the biggest myths surrounding autism is regarding eye contact. Some individuals rarely or never make eye contact. Many do, but it may be less than those who don’t have autism and when stressed and anxious difficulties with eye contact may become more apparent. There are a few people who make ‘too much’ eye contact, which can cause misunderstandings.
“Will my autistic child grow out of it?” – No, autism is a lifelong condition. However, with the right support from family and schools, many children can learn strategies to help. Some people adapt so well that the condition is almost invisible apart from when with the people they spend a lot of time with.
How can I get a diagnosis for my child?
If you think your child has autism, in the first instance you should speak with your GP, Health Visitor or School Nurse. Your school’s SENDCo (Special Educational Needs and Disabilities Coordinator) should also be able to help with a referral. They will ask you a variety of questions and then make a referral to a specialist paediatrician or child psychiatrist depending on the presenting problems. In Bedfordshire it is common practice to be referred to a specialist team either at the Child Development Centre in Kempston or the Edwin Lobo Centre in Luton. Your child may also be seen at an affiliated practice.
How does an adult get a diagnosis?
Adults suspecting they may be on the Autistic Spectrum need to speak with their GP. You are entitled to ask for an assessment by a psychiatrist or clinical psychologist. At the present time adults in Bedfordshire may be referred to Twinwoods in Clapham for an assessment.
The Autism Act 2009 led to the government producing statutory guidance for adults with autism called the ‘Autism Strategy’ (first published in 2010 and updated in 2014). This means that local authorities must have a clear pathway of diagnosis for adults. Wherever you live, you should be able to have a diagnostic assessment and your GP should be able to tell you how to access this assessment.
There isn’t one standard way for an assessment to be carried out as there are more than one diagnostic tools. However, there are guidelines that professionals should be following such as those issued by the National Institute for Health and Clinical Excellence (NICE). You can read the NICE guidelines on their website.
What causes autism?
Autism can affect both sexes, all levels of ability and all families wherever they live. Although there is a lot of evidence for a strong hereditary link, there is no single one genetic cause of autism, and this is by all means not the complete picture. There are certain other conditions and circumstances (such as very premature births and multiple births) which are associated with a higher incidence of autism. A link with the MMR vaccine has been indisputably proven not to be the case.
How will my child cope as an adult?
This really depends on the individual’s level of difficulty and varies widely. Some will need lifelong intensive care package, some will need ongoing support in a few areas of their life, and there are those that understand and manage their condition so effectively they are independent and successful.
How can I get help for my child in school?
In the first instance speak with your school’s SENDCo (Special Educational Needs and Disabilities Coordinator).Support and information is also available from Outside-iN. Those attending schools in Central Bedfordshire can contact Central Bedfordshire SEND Parent and Young Person Partnership Service. Those living in Bedford Borough can contact Bedford Borough SEND Advice. Advice is also available from IPSEA and Network 81.
Where else can I go to for support and advice?
Your GP or Health Visitor is often your first port of call. They may refer you for an assessment. Other agencies that can help give support and information include:
- The National Autistic Society
- Autism Bedfordshire
- Carers in Bedfordshire
- The Avenue Support
Co-morbidity (associated conditions)
Although not diagnostic criteria, difficulties with coordination are very common for someone with autism, certainly at the more able end. For someone whose coordination is significantly affected they may also receive a diagnosis of Dypraxia. Dyslexia and Dyscalulia are also co-morbid with autism. Impairments in the Executive Functions are common place and many of those diagnosed with an ASC are also diagnosed with ADHD. Self-esteem and anxiety can become an issue especially in older children and adults which can lead to mental health disorders if not addressed.
In May 2013, DSM-5 redefined how autism is diagnosed. The previous labels of Asperger’s Syndrome (AS), High Functioning Autism (HFA), Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Pathological Demand Avoidance (PDA), Atypical Autism, Classical Autism/Kanner’s Syndrome were all brought together under one heading ‘Autistic Spectrum Disorder.’ Those with an existing diagnosis still retain their diagnosis, but going forward, more and more people will be diagnosed with an ASD regardless of where they fall on the spectrum. Many will still choose to identify with a particular label that they feel best describes them.
A note on Asperger’s Syndrome/High Functioning Autism
These diagnosis’ have been used to describe individuals considered to be at the more ‘able end’ of the spectrum. Asperger’s Syndrome was used to diagnose more able people with autistic impairments but who developed speech in line with their peers. High Functioning Autism has historically been used to describe someone whose speech was delayed but later caught up and the individual has then followed the same trajectory as someone with Asperger’s Syndrome. As older children or adults, there is no difference and the two labels have often been and are still used interchangeably.
What can you do to help?
It is very difficult to prescribe a prescriptive list of ways to help as people’s needs vary so widely. The below are just a few general recommendations:
- Find out more about autism. There are lots of things to read about autism in books and on the internet, and also support groups where you can find out more and meet other parents/carers of children with autism.
- Outside-iN has two parent/carer support groups a month and regularly runs Breaking Down Barriers Training Courses for parents/carers of children with autism and/or ADHD. Outside-iN also has an adult support group for adults with ADHD and /or Asperger’s Syndrome/High Functioning Autism formally or self-diagnosed.
- Individuals with autism usually manage best with structure and routine and are pre-warned about any changes.
- Identifying an individual’s preferred communication style can reduce anxiety and facilitate communication both ways. This may be spoken words or it may be pictures (such as Picture Exchange Communication System (PECS), signing (such as Makaton), or written down methods such as email.
- It is important to recognise that just because someone with autism is non-verbal or has limited speech does not mean they cannot understand and cannot communicate.
- What is obvious to others may need explaining to the individual with autism, especially social situations. Social stories and comic strip conversations are excellent ways to help do this.
- Written and spoken language should be clear, concise and saying exactly what is meant.
- Allow time for someone with autism to process what has been said and formulate their response.
- Quiet environments with as few distractions as possible are less anxiety provoking.
- A good understanding of an individual’s sensory needs both the ones they prefer to avoid and the one’s they seek out reduces anxiety and distractibility.
- Identification of a ‘safe-place’ usually somewhere quiet for the individual with autism to escape to when they feel overloaded can help them decompress.
- Whilst the usual childhood tantrums may occur, it is important to recognise that ‘meltdowns’ and perceived ‘challenging behaviour’ is due to overload and anxiety and not wilful disobedience or a sign of poor parenting.
- Understanding the condition, the perspective of the person with autism, accommodating their needs, focusing on the celebrating their strengths are essential.
- Older children and adults with autism may find some of the suggestions to manage ADHD also helpful.