Frequently asked questions

+ What is autism?

Autism is a lifelong developmental condition that affects the way a person communicates, interacts and relates to the world around them. Like all people autistic people are different to each other, and have their own strengths and challenges.

However, all autistic people have difficulty with communication and social interaction. This may mean not talking at all or limited speech. It may mean longer time is needed to process information, or reading facial expressions may be difficult. In addition, people who are on the autism spectrum are likely to demonstrate repetitive behaviour such as doing or thinking the same thing. Autistic people can also find unexpected changes difficult.

They can find the world around them overwhelming. Many people with autism will also be over- or under-sensitive to sounds, touch, taste, smells, light, colours, temperatures and pain. For example, they might find background sounds unbearably loud, distracting or painful.

This can make the world for a person on the autism spectrum an unpredictable and confusing place, and taking part in everyday family, school, work and social life can be challenging. An autistic adult or child can go into a ‘meltdown’ or ‘shutdown’ as a result of the daily challenges they face.

Some people with autism are able to live independent or semi-independent lives but others may need a lifetime of specialist support. Some people with autism may have accompanying learning disabilities, mental health conditions or other conditions.

If you are autistic, you are autistic for life. There is no ‘cure’. However, with the right support, people can be helped to live a fulfilling life. The earlier that a diagnosis of autism is made, the better the chances are that the individual will receive appropriate help and support. Timely intervention has been shown to improve the quality of life for people on the autism spectrum and their families, and can significantly reduce the amount of support needed later in life.

Autism affects approximately more than one in every 100 people and, as diagnostic skills improve, more people are being diagnosed.

It is estimated that there are about 1,100 people on the autism spectrum in Jersey.

+ Describing autism - terminology

Over the years, different diagnostic labels have been used, such as autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and Pathological Demand Avoidance (PDA).

Different people with autism will refer to their autism differently. Kenney et al (2015) found that all groups like the terms 'on the autism spectrum' and 'Asperger syndrome'. Autistic adults like the identity-first terms 'autistic' and 'Aspie', whereas families didn't like 'Aspie'. Professionals also like the term 'autism spectrum disorder (ASD)'.

+ What causes autism?

The exact cause of autism is not known. Research shows that genetic factors are important. It is also evident that autism may be associated with a variety of conditions affecting brain development, which occur before, during or soon after birth.

+ What are the diagnostic criteria for autism?

Autism is different in every person as everybody is unique however, in order for autism to be diagnosed there is usually some key criteria including persistent difficulties with social interaction and communication, restricted and repetitive patterns of behaviours, activities or interests since childhood to the extent that these impact everyday functioning.

Social communication Difficulty in social communication is common in autistic people although presents differently in each person. Autistic people can find it difficult to use or understand facial expressions, tone of voice, jokes and sarcasm. They can often take things literally which can make communication confusing for them.

Some autistic people are non verbal or have limited verbal communication. They may use alternative forms of communication such as Makaton sign language or visual symbols, and this can be an effective form of communication for them.

Others may be able to speak verbally but may still find it difficult to understand the expectations of a conversation.

Some may repeat what somebody has just said or something they have heard said a long time ago, this is called echolalia.

It helps to give an autistic person time to process what has been said to them, and to speak clearly. If an autistic person is verbal you should ask if there is anyway you need to adapt your communication with them.

Social interaction Social interaction can be overwhelming and confusing to autistic people. Lots of autistic people want to be social and interact with others but may be unsure how to go about doing this. Autistic people can find understanding others and their own emotions difficult. They may also struggle to understand other people’s feelings and intentions.

This may make an autistic person appear aloof, insensitive and appear to act strangely or in a socially inappropriate way.

For these reasons they may find it difficult to form and maintain friendships and relationships.

Repetitive behaviour and routines Autistic people may find structure and routines helpful as a way of understanding their chaotic and unpredictable world. They may prefer to have a specific daily routine to follow, and struggle when things in their routine change unpredictably. They may always travel the same way to school or work, or have the same lunch every day.

With the right support to prepare for changes in advance this can make change more manageable.

Highly focussed interests Some autistic people have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. An interest may sometimes be unusual.

Lots of autistic people are able to channel their interest into studying, work or volunteering. Autistic people often report that the pursuit of such interests is fundamental to their wellbeing and happiness.

Sensory sensitivity Autistic people may also experience over and under sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain.

+ How does an adult go about getting a diagnosis?

Adults that are looking for an autism diagnostic assessment can refer themselves to the Jersey Adult Autism Service (JAAS) by completing this referral form: JAAS Referral Form

JAAS is a service run by the Health and Social Services Department for adults who think they may have autism or for those who already have a diagnosis. It is also for their families and carers.

You can contact the JAAS team via:

Phone: 445723

Email: JAAS@health.gov.je

You can also ask your GP to refer you.

Here for you Going through assessment and possible diagnosis can sometimes be a daunting time for your family. Autism Jersey can offer support every step of the way. Please get in touch with Kerry O’Donovan, Support Services Manager, by email at k.odonovan@autismjersey.org or by phone on 07829 999 808.

+ What should I do if I suspect that my child has autism?

My child is under 5 years old The child is referred to the consultant paediatrician and is then referred to the Early Years Social Communication Team. This team consists of a parent partnership worker, a speech and language therapist, an occupational therapist and sometimes an educational psychologist. The team offers support and assessment with six-monthly clinic reviews. During these clinics, diagnostic feedback may be provided where appropriate.

My child is between 5 and 18 years year old You will need to see your GP, health visitor or your child’s teacher if you think that your child is showing symptoms of autism spectrum condition (ASC), or you’re worried about their development. This may help you to compare your child’s development and behaviours with others of a similar age and get an opinion from someone else who knows the child well.

If appropriate, the GP, health visitor or teacher can refer you to another service with experience in the area of autism who can make further assessments in specific areas of difficulty. If your child is referred they may be seen by a:

speech and language therapist – a specialist in assessing and treating communication problems
educational psychologist – an education professional who works with schools to ensure pupils’ learning and special needs are met
occupational therapist – who specialises in motor co-ordination, daily living skills and sensory issues
paediatrician – a doctor who specialises in treating children and who may check for any co-existing conditions or problems similar to autism
CAMHS professionals such as a child and adolescent psychiatrist, a clinical psychologist, a nurse practitioner or a social worker, who all have specialist training in mental health issues

Each of these professionals will have experience of normal child development as well as the signs and symptoms of possible autism and social communication difficulties. They may advise that a full multidisciplinary assessment is required and make a formal referral to the Autism and Social Communication team.

If accepted, you will be offered a clinic date appointment. The aim is to offer an assessment within six months. You will be involved in a one-day assessment and on most occasions you will be given diagnostic feedback on the same day.

A written report will be sent out within four weeks which will detail the team’s decision as to whether your child meets the criteria for diagnosis of autism. In addition, future recommendations for your child will be given.

Right Help, Right Time The new, revised referral process named Right Help, Right Time, as part of the Jersey’s Children First commitment, enables any professional involved in a child/ young person’s life to initiate the referral process (this is now pre-birth to 25).

Training for this process has been offered island wide and is something that we at Autism Jersey are now trained in, and utilising. All professionals involved in a child or young person’s life have access to, and full use of all forms and templates used in this process.

The new Child and Family Assessment and Plan, built upon the initial referral, replaces previous multi-agency assessments and ensures children and their families tell their story only once and that their information and plan moves with them, responding to changing needs and situations.

Schools Four schools in Jersey have special provision for autism and social communication needs. They are:

Rouge Bouillon and St Saviour’s School (primary)

Grainville and Haute Vallée (secondary)

You can find out more about them here.

+ How does autism differ for men and women?

There are more men and boys diagnosed autistic than women and girls. It used to be understood that autism was more common in males than females. However, research is now showing that this may be due to females being better at masking themselves in social situations. This means they observe and study how others act in situations and try to copy their behaviour to cover how.

For more on the latest research, go to the National Autistic Society website www.autism.org.uk.

+ What is Asperger Syndrome?

Asperger Syndrome (Asperger's) is no longer used as a diagnostic term for autism.

Historically, Asperger syndrome was used as a diagnostic term for some autistic people who did not also have a diagnosis of a learning disability. Broadly, it is now agreed that what was referred to as Asperger syndrome is part of the autism spectrum and there is no need for a separate term.

Some people who received a diagnosis of Asperger syndrome continue to use this terminology to refer to themselves. Others do not and this is a personal choice.

+ What should I do if I see a child having a meltdown in a public place?

One of the toughest things that a parent or carer with an autistic child faces is when the child has a meltdown in a public place, maybe at an airport or a supermarket or in the middle of the street.

Please be calm, please don’t stare, please don’t judge or offer random advice. I am not a bad parent.
Please don’t talk to my child during their meltdown – they are overloaded already and you may make things worse for them.
Please ask me if you can help in any way – that offer is more than words, it is a sign that someone understands.
A smile would be great right now so we don’t feel judged and alone. We would welcome an “It’s OK” too, even if mouthed from afar.
Please remember that we may experience this many times in a day and we know what works best for our child – we may ask for space, we may ask for time, we may ask for help to achieve this, we may not.
I may have other children with me, please be my eyes and ears so all of my children are safe.
If you can see I have bags and other things, please help me by offering to move them for me and to where we might be headed to calm down.
Is a closed door blocking our movement to a safer, calmer place? Please be kind enough to hold the door. Do you know a quieter place? Please tell us! We need time to recover.
We might not have the time to say thank you – but we will be thankful, every, single, time.