After Diagnosis – Information for parents and carers of children with autism


We want a world where all people living with autism get to lead the life they choose.

1. Get the support, education and training they need

2. Live with dignity and as independently as possible

3. Be a part of their community and wider society

4. Be understood by all professionals who support them

5. Be respected for who they are by a knowledgeable public.


We’re Here To Help

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A lot of parents are given a diagnosis without any guidance on what to do next, and knowing little or nothing about autism.

You might be feeling confused, frightened or overwhelmed.

You’re not alone.

Thousands of parents contact us after diagnosis to ask, ‘What next?’ and we’re here to help.


You’ve probably got a lot of questions, and it can be helpful to write them down before you call, as a reminder of what you want to cover.

Once we know about your situation, we can:

explain more about autism

help you explore strategies that could help you or your family

give you more information and contacts

Terminology


Autism is a spectrum condition, so we’ve kept description of autism as broad as possible.

It probably won’t fit your child exactly, because there are as many different ways of describing autism as there are people on the autism spectrum – everybody’s different.

Your child may have received a diagnosis of autism spectrum disorder, childhood autism, atypical autism, Asperger syndrome or another related condition.

We use the term autism throughout this webpage to cover all of those conditions 2 3 (including Asperger syndrome).

Dealing with all the new terms and phrases that come with autism can be overwhelming to begin with. If you’re feeling daunted, we’re here to help. You can contact us with any questions and we can help make things clearer.


Dealing with diagnosis

 Feelings and reactions

The emotional effect of a diagnosis can be really overwhelming, and even heartbreaking, at first. It can feel like a lot to deal with and a lot to take in, even if it’s something you were expecting. It can be even more difficult when you’re dealing with other family members’ feelings as well as your own, which is why it’s really important to get all the support you can. Feelings and reactions vary from person to person. It’s completely natural to feel worry, sadness, grief, guilt or anger – or a combination. It’s also natural to be unsure of how you feel, to go through some shock, or to want to get to work on finding solutions straight away. Lots of parents find that diagnosis turns out to be a very positive thing, and can lead to practical support, from help at school to extra funding. Accepting support is not always easy at first, especially if you’re used to coping on your own, but it can make a big difference.

A diagnosis can come as a relief. It can be a weight off your shoulders for someone to give a name to what you are dealing with. It is important to know that, just because you’ve been struggling, it doesn’t mean you’ve done anything wrong or been a bad parent. Thousands of parents have found themselves in this situation and have got through it, with support.


Expectations and beliefs

You might find that you’ve got preconceptions of autism from films you’ve seen or articles you’ve read. You may even find that you’ve got prejudices that are challenged when you start to find out more about autism and the impact it can have on your child.

For example, not everyone with autism has an outstanding talent, although every child can develop – some in very startling ways with the right support – and some go on to do great things in the world.


Accepting your child’s diagnosis can be a really difficult process.

Understanding autism, and getting the right help and support in place, takes time and effort. Early support, and well-targeted help at any time, can be really helpful in helping your child to achieve their potential. It’s important to remember that there are other parents out there going through the same thing.

One of the many ways we can help is by putting you in touch with other families who know what you’re going through.


Coping with others

Dealing with people, including professionals, who don’t yet know your child or your family can be a challenge.

We know that it can be difficult to stay calm and to be assertive.

Other parents have said that they find it really useful to keep leaflets or websites close by, and to record their progress by writing notes about phone calls or discussions.

It’s important to remember that you’re learning, and there are organisations that provide free courses to help you in these areas, and even attend meetings with you.

You don’t have to do it all on your own.

You can get as much support as you need, for as long as you want.

You’re not alone.


About autism

Autism (including Asperger syndrome) is a lifelong developmental disability that affects the way a person communicates with other people and relates to the world around them.

 It’s a spectrum condition, which means that it affects people in different ways.

Everyone with autism is different. Some children with autism may have an accompanying learning disability, or related conditions such as dyslexia or epilepsy.

Children with Asperger syndrome do not usually have learning disabilities. After diagnosis 6 7 The exact cause of autism is still being investigated. Research suggests that a combination of factors – genetic and environmental – may account for changes in brain development. Autism is not caused by a person’s upbringing or social circumstances, and it’s not anyone’s fault.

All children with autism find it harder to manage in the world the way it is.

They approach the world differently from other people and have difficulty with communication, social interaction, and social imagination.

You may hear these referred to as the ‘triad of impairments’. This means that children with autism usually:

find it hard to understand non-verbal communication, like facial expressions and tone of voice

take language very literally and find metaphors and idioms confusing and sometimes frightening

have difficulty recognising people’s feelings or expressing their own, so they find it hard to understand social conventions like the give-and-take nature of conversations

struggle to understand and predict people’s behaviour, and find change and unexpected situations stressful

have a strong preference for routines and can develop intense, sometimes ‘obsessive’, special interests

don’t engage in imaginary play, preferring to act out something they’ve seen and repeating the same scene over and over again.

Lots of children with autism are over- or under-sensitive to certain sounds, light, touch, smells and tastes, and they may avoid or seek out sensory stimuli.

Strengths: Children with autism have a unique and individual view of the world, which lots of people who don’t have autism find interesting, refreshing and valuable.

Some children with autism have a good eye for detail and accuracy.

Children with autism are likely to remember information, routine or processes once they’ve learned them.

Most children with autism are good at learning visually. Using real objects, pictures, demonstrations and written material can all help.

Some children with autism can focus on their special interest for a long time and may choose to work in a related area.

These are just some of the main characteristics of autism. You can find out more at http://www.autism.org.uk.

Some people ask if there is a ‘cure’ for autism. There is currently no known cure for autism – children with autism grow up to become adults with autism. But there are plenty of ways that we can help children with autism. Early diagnosis and the right education and support can all help people with autism to fulfil their potential.


Contact with professionals


You can’t tell that someone has autism just by looking at them. Some people with autism can appear to be very able, so you may need to tell social, education and healthcare professionals about your child’s condition and their need for support.

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