This document provides information and advice for parents of children with autism. It discusses common autism symptoms, how to get a diagnosis and statement of special educational needs, school options, transition to adulthood, financial support, future planning, and offers contact information for an organization called the Hesley Group that can provide additional guidance. The document aims to answer questions parents may have and direct them to helpful resources.

2. 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

3. 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.

5. 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 Links
A great place to start for finding websites dealing with autism:
www.autismlinks.co.uk
The National Autistic Society
The authority on all aspects of autism, whose site is packed with really
useful info: www.autism.org.uk

6. OAASIS
The 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 Solicitors
Specialist legal advice for education, social and health care:
www.maxwellgillott.com
Irwin Mitchell Solicitors
One 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

7. 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.

8. 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.

9. 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.

10. ‘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.

11. 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.

12. 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.

13. 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.

14. 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.

15. 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.

16. ADVOCACY

17. 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.

18. 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

20. 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

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

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

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

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

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

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

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

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

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

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

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

42. Central Services
Hesley Hall
Tickhill
Doncaster
DN11 9HH
Freephone: 0800 055 6789
Facsimile: 01302 861661
Email: enquiries@hesleygroup.co.uk
www.hesleygroup.co.uk
IdeaanddesignbyPeppertreeCreativeLtd.Telephone01302802001.
Email:info@wearepeppertree.co.ukwww.wearepeppertree.co.uk