SOME OF THE SYMPTOMS? Finger flicking or hand flapping Poor eye contact Repetitive language or actions Restricted patterns of interest Rigidity of thinking Rocking back and forth Difficulty understanding social rules Difficulty in managing emotions Over-sensitivity to noise or touch Obsessions or excessive interests, storing trivial facts Sticking to routines, maybe getting upset if they are broken Clumsiness Lack of understanding of other people’s thoughts and emotions Strange eating or sleeping behaviours

WHERE DO YOU START?We know that living with autism isn’t easy.

But you’re not alone in all this. We’re here to help. And we’re going to start by giving you some answers to those big questions that keep cropping up.

Chances are, lots of other questions will pop into your head along the way.Make a note of them – there’s plenty of space at the back of this book to do so. And when you are ready give us a call and we’ll do our best to answer them on 0800 055 6789.

Your child might be the only one in your street or playground living with the daily challenge of autism, but you’d be surprised just how common it is.

Latest estimates suggest 1% of the UK population has an Autistic Spectrum Disorder (ASD).

The good news is, with those big numbers comes big support. There are lots of really good charities, support groups and organisations, like us, ready to offer advice and support whenever you need. So don’t be afraid to ask.

The rule of thumb is usually to start with your GP. Once your doctor is aware of your child’s difficulties, he or she will arrange for your child to be assessed. This will probably be

a multi-agency assessment and may include Child and Adolescent

Mental Health Services (CAMHS), local educational services, educational

and clinical psychologists, a community learning disabilities team, speech and language

therapists, paediatricians and a social worker or care manager.

Like any concerned parent, you’ll want all the info you can get your hands on. So try these too.

Autism LinksA great place to start for finding websites dealing with autism:www.autismlinks.co.uk

The National Autistic SocietyThe authority on all aspects of autism, whose site is packed with really useful info: www.autism.org.uk

OAASISThe Office for Advice, Assistance, Support and Information on Special Needs, an organisation run by independent providers The Cambian Group: www.oaasis.co.uk

Advisory Centre for Education (ACE)Independent advice to parents/carers of children in state-funded schools: www.ace-ed.org.uk

Maxwell Gillott SolicitorsSpecialist legal advice for education, social and health care: www.maxwellgillott.com

Irwin Mitchell SolicitorsOne of the UK’s most successful and respected law firms: www.irwinmitchell.com

OR MAYBE WE CAN HELP?Of course, you can always talk to us. As an independent specialist with over 35 years’ experience we have a wealth of knowledge ready to share. Call us free on 0800 055 6789. www.hesleygroup.co.uk

HOW DO WE GET A DIAGNOSIS, OR STATEMENT OF SPECIAL EDUCATIONAL NEEDS?The place to start is usually with your GP and local authority, a referral from them will get the ball rolling.

If the whole process looks a little confusing, that’s because it can be. It can be a long, sometimes frustrating process. Just remember, everyone involved is trying to do the right thing, even if it doesn’t always look that way. If you need a little guidance, we can help. Call us on 0800 055 6789.

WHAT IF WE KEEP GETTING BOUNCED BACK?Blocked paths. Indecisive review meetings. More tests. Just some of the things that will crop up that will want to make you pull your hair out. Don’t. Give us a call instead and we’ll do what we can to help on 0800 055 6789.

WHAT IF I DISAGREE WITH THE OUTCOME?You may not be a clinical psychologist or a GP, but you know your child. If there’s something about your child’s diagnosis that you don’t feel is right, here’s what to do.

1. Talk to your social worker or care manager, Special Educational Needs Coordinator (SEN), local Parent Partnership team or CAMHS team. Chances are everything can be sorted out from here.

2. Talk to your GP about a review. Ask for a chat, further help, or even for a referral to get a second opinion or reassessment from the same or a different medical panel.

Give us a call and we’ll do what we can to help or point you in the right direction: 0800 055 6789.

WHICH SCHOOL IS THE RIGHT SCHOOL?Getting the right ‘fit’ between you, your child and the school is vital for his or her development and your peace of mind.

The local authority team that helped you through the diagnosis will be able to give you great advice on what kind of school is best for your child. But don’t expect to be able to pick the right school from your living room. You need to get out there and experience as many as you can. All schools will be happy to show you around. But before you jump in the car, here are the options usually available.

• Mainstream school with no assistance

• Mainstream school with support from a Special Educational Needs (SEN) team and an Autistic Spectrum Disorder (ASD) unit

• Local authority special school on a day, 38- or 52-week residential basis

• Independent schools (like ourselves) on a day or residential basis

• Home education with additional support. You do have the right to choose to home educate your child, but you will need to speak to your LEA about this.

‘Which School? For Special Needs is available from good bookshops and well worth a thumb through: www.johncatt.com

Educational consultants such as Gabbitas (www.gabbitas.co.uk) and the ever-reliable OFSTED are also good places to start.

National Parent Partnership – Network Parent Partnership Services are statutory services offering information and support to parents and carers of young children with special educational needs: www.parentpartnership.org.uk

Independent Schools Information Service: www.isis.org.uk

Autism Education Trust – Dedicated to co-ordinating and improving education support for all children on the autistic spectrum in England: www.autismeducationtrust.org.uk

NEED A HAND? Did you know you could also request an independent advocate to act on your child’s behalf? He or she will help your child in choosing the right services. Talk to your social worker or care manager about the benefits of appointing an advocate.

WHAT HAPPENS IF WE CAN’T GET THE SCHOOL WE WANT?Talk to your social worker, care manager or Local Education Authority. Also if necessary seek mediation through your local authority Disagreement Resolution Service.

Still no joy? Ask for advice from the Advisory Centre for Education (www.ace-ed.org.uk). They provide independent advice to parents/carers of children in schools who are experiencing difficulties such as bullying, SEN admissions and exclusions from school. Or speak to us on 0800 055 6789.

IS THERE ANYTHING ELSE WE COULD BE DOING?

Probably yes. And if your child needs a little extra support, the sooner you get professionals involved the better.

Depending on your child’s needs applied behaviour analysis, clinical psychology, psychiatry or speech and language therapy could all help your child’s development. Speak to your social worker, care manager, CAMHS team, GP, local authority or give us a call on 0800 055 6789 if you need directing to any of these services.

THINGS MOVING A LITTLE SLOWLY? By now you know better than anyone that things can move quite slowly. But if you’re having trouble accessing any services in a reasonable amount of time maybe we can help.

We have a team of multi-disciplined experts we can tap into. Call us free on 0800 055 6789.

WHAT HAPPENS WHEN I NEED A BREAK?It’s ok to say ‘I’ve had enough’, ‘I’m struggling to cope’ and ‘I need a break’. The trick is to spot your breaking point before it breaks you.

Take our advice. Take a little time off. Here’s how to do it.

As a parent of a child with autism, you are entitled to a Carers Assessment under the Carers and Disabled Children’s Act 2000. In some areas respite care is provided by your local authority. The local authority will consider what help you need and decide which community services it will provide to help you. If you are struggling to access this information or are unsure which steps to take next, please call us free on 0800 055 6789.

There are 850,000 carers in Britain who EACH provide over 50 hours of care a week.

WHO PAYS?Schooling, transport, clinical services, respite care, advocacy, legal advice. These aren’t cheap, but it’s the role of the local authority to identify and provide all the services your child needs. So you will not normally have to pay towards meeting your child’s identified needs, but you may wish to contribute to other services that are above the statutory requirements set out within your child’s assessment.

You can discuss these extra services with your local authority, social worker or care manager, as these representatives are just as keen to get the best outcomes for your family as you are.

There are a range of benefits available, including support at home. One of our experts can tell you what you could be entitled to. Give them a call on 0800 055 6789. We can even help point you to the right person in the right department within the local authority.

ADVO

CACY

WHAT ABOUT WHEN MY CHILD GROWS UP?The transition from adolescence to adulthood is a challenge to any parent. Add autism to the mix and there are bound to be lots of questions.

The key to handling this is to adopt a cool, calm and collected attitude and know which questions to ask.

When should we have our first transition review?This process should start in year 9 when your child is about 14.

Who will be involved?Your local authority, Connexions, a representative from your child’s school, a transition social worker or care manager, and you.

Will my child need another assessment?Yes, the Community Care Act 1990 ensures that the local authority have a duty to carry out a comprehensive assessment of needs before your child moves into adult services.

When will my child leave school?In England and Wales your child is entitled to schooling until the summer of their 19th birthday. In Scotland this limit is 18 years of age.

Can they leave earlier?Yes, if everybody agrees that’s what’s best for your child.

Where will they live?There are many choices available and it is important to get the right accommodation which has the right level of support. This could be in supported living accommodation, an independent living environment or in residential care.

How will they fill their days?For employment or placement support, talk to your local authority Supported Employment Team, or the Disabled Employment Advisor at the Job Centre. Alternatively, there’s a range of leisure and vocational activities available from different providers to offer structure and purpose to the day.

Who pays now?It’s still down to the local authority to fund services for meeting assessed need. Health authorities may provide some funding for services too through continuing healthcare.

WORTH A READ The Government’s Valuing People Now strategy looks at the challenges for people with learning disabilities and their right to lead their lives like anyone else: www.valuingpeoplenow.dh.gov.uk

While you’re fit and well, get yourself some good advice. You may need to put special conditions in your will, consider changing your life insurance, and set up a trust fund for your child. A trust fund will ensure you are providing for your child’s future without putting at risk any benefits he or she may be receiving from any government.

Dependent on your child’s ability to make decisions regarding his or her own welfare, you may be required to appoint someone you trust to act as a power of attorney. Check out www.direct.gov.uk for more information.

We’ve heard lots of good things about Maxwell Gillott Solicitors (www.maxwellgillott.com) and also Irwin Mitchell Solicitors (www.irwinmitchell.com) but there are many others out there who can help you plan for the future.

SO THEN, WHAT DO YOU THINK?We want this book to be as useful as possible. So if we’ve missed something important, please let us know and we’ll include it in the next edition. Email: enquiries@hesleygroup.co.uk

People with autism are often

and the use of pictures and symbols

can really help

visual learners

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Call us on 0800 055 6789www.hesleygroup.co.uk

Central ServicesHesley HallTickhillDoncasterDN11 9HHFreephone: 0800 055 6789Facsimile: 01302 861661Email: enquiries@hesleygroup.co.uk www.hesleygroup.co.uk Id

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