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New to Autism

This page is a work in progress  - please bear with us. 22/4/13


Educational Support 

Sometimes children with autism do not have special educational needs. They do not need any extra help to be successful in nursery or school. Many children with autism, however, do have special educational needs. 

Most help for children with autism is provided by the educational service of North Yorkshire County Council, called the Children and Young People's Service. Speech and language therapy and OT are provided by health services. Please do not wait to go through diagnosis before asking for help from your child's nursery or school. Support for adults is made via an assessment from Adult Social Care Services. More information for adults can be found in the Adults section below.

It is widely understood that early intervention is beneficial to children with autism. A diagnosis is not required to access most of the educational service, it is 'needs-led'. In fact, for children with special educational needs, the Council has a duty in law to identify and provide for the educational needs of a child with special educational needs from birth. 

A child does not have to attend a nursery or school to receive support. Special educational needs do not simply mean things like help with reading or writing. Anything that affects learning can be classed as a special educational need, including repetitive or rigid behaviour, sensory sensitivities, social skills difficulties, challenging behaviour and dietary issues. This is by no means a complete list. 

Most often these needs are met through the 'graduated approach' in nurseries and schools, called Early Years Action, Early Years Action Plus, School Action and School Action Plus, as well as through a Statement of Special Educational Needs. It is worth emphasising - these additional levels of support are available without diagnosis. A child does not have to start at the lowest level of support and move up the ladder - although this is commonly what happens. The support provided has to meet all the special educational needs of the child. 

For more information on additional help ask your child's nursery or school's named Special Educational Needs Co-ordinator (SENCO) or contact the Council's Special Educational Needs and Disability (SEND) Service. (This includes children who do not attend nursery.) 

You can download a copy of the Special Education Needs Code of Practice here which sets out how children get extra help or call 0845 6022 260 quoting reference DFES 581/2001 and you will be sent a free copy. The NAS has a great deal of information on its website here, and there is plenty of advice on rights, entitlements and model letters on how to ask for help from IPSEA here.

Services that can be accessed without a diagnosis include:

Area SENCO (advice for pre-school nurseries)
Autism Outreach Service from the Hookstone Chase Enhanced Mainstream School (referral by nursery or school required)
Educational Psychology Service (parent can self refer or nursery or school can ask for referral)
Parent Partnerhsip Services (supports parents)
Speech and Language Therapy (operate a drop-in service)
Occupational Therapy (referral via GP)
Council Cygnet courses - parent/carer training programmes. Officially a diagnosis is required to attend, but due to the long waiting lists for diagnosis it is worth seeing if the Council will waive this requirement. They have in the past.

Services that require a diagnosis:

ASCOSS (autism outreach service)
The Forest School (has a nursery from three- a statement of SEN is required)

Social Services Support

Similarly your child and your family may be entitled to some support from The Disabled Children's Service (part of Social Services). Your child is entitled to an assessment of need as is (separately) your family. Following these assessments you may be provided with Short Breaks or support and advice, or referral to other agencies. Short Breaks used to be called respite care. This allows a child to be taken out on trips or looked after in the home and give the family some time without caring for the child.

Support from the Branch

We provide monthly evening support group meetings, often with an invited speaker. See the home page for details of upcoming meetings. We also run a telephone helpline (see Contact page) and most years run an autism awareness conference. The Branch is made up of parent/carer volunteers and always welcomes new members.

Other Help

For children aged over four and in nappies, the Continence Service will provide them for free. See your local health visitor for more information.

If your child struggles visiting the dentist you can ask your existing dentist or GP for a referral to the Shared Dental Service. This is a specialist service for children and adults with a range of disabilities including autism. It is based across the road from Harrogate Hospital. The service allows for repeated visits and extended appointments.

Your GP can also refer you to Wheelchair Services for the loan of a Maclaren Major buggy should your child have difficulty walking due to their autism.

Your child may also be entitled to a Disabled Person's Bus Pass which will allow your child and any companion to use buses for free off-peak. (Your child must be in receipt of the higher rate of the mobility component of Disability Living Allowance). For more information go to Harrogate Library, where the application can be processed or see here.

Usually public swimming pools will provide a discount for the carer when taking a child with autism swimming. Ask at reception.

Financial help (section to be completed)

The financial impact on a family can be great. 

Disability Living Allowance (DLA) gateway to Carer's Allowance and additional Tax Credits (see Carers' Resource)

Cerebra

Family Fund

Caudwell Children

Inclusion Funding

Diagnosis

This section sets out the process of diagnosis in the Harrogate and District area covered by Harrogate Child Development Centre (part of Harrogate Hospital). It will vary in other areas. There is an eligibility criteria for assessment. A child must fulfil two out of three of the following:

Live in the area covered by the CDC
Have a GP in the area
Attend an educational setting in the area

Diagnosis is carried out by medical professionals. Teachers, social workers, local authority employees and (usually) educational psychologists cannot diagnose autism . 

The video below is from a well known campaigner and parent of a child with autism, Virginia Bovell. She talks about going through diagnosis and the setting up of Treehouse School in London.

YouTube Video

Children (0-19)

If you are concerned about your child make an appointment with your GP, health visitor or go to a Speech and Language Drop In Clinic. If a professional thinks further investigation is appropriate you will be referred to a Paediatrician at Harrogate Child Development Centre. You do not have to take your child with you to get a referral from your GP, but you may wish to take with you a list of your child's concerning behaviour.

A Paediatrician will then decide whether to put your child forward for assessment. The time from referral by GP/Drop-In to first appointment with a Paediatrician must be within 3 months, and is set out in the NICE Guideline.

The NICE Guideline sets out how medical professionals should diagnose autism here

Waiting List

As of April 2013 there is  a waiting list of around 15 months from Paediatrician agreeing to assessment to actual assessment. We understand the waiting times are increasing. This is due to the number of assessments the Clinical Commissioning Groups fund Harrogate Child Development Centre to undertake. Unfortunately there is no maximum time limit set out in the NICE Guideline.

The service is commissioned by Harrogate and Rural District Clinical Commissioning Group (HaRDCCG). Dr Rick Sweeney is the Lead for Vulnerable people. We understand, given the difficulties accessing diagnosis are county-wide, that the Yorkshire and Yorks CCGs will be looking to work together to find a solution.

Assessment

You will be contacted by Rachel Molyneux, the Autism Assessment Co-ordinator, the term before assessment is due, who will explain the process and be a point of contact throughout.

Assessment involves a multi-disciplinary team, led by a Clinical Psychologist called Dr Elizabeth Billington and a Speech and Language Therapist called Jill Oliver, along with some input by a Paediatrician. Other professionals may be involved eg Occupational Therapist. 

There is no simple test to diagnose autism, instead the behaviour of your child is analysed. This is done by talking to parents and professionals involved with your child as well as observing your child. The team will use the ADOS and DISCO tools to help with the assessment.

Your child may be seen in different settings eg CDC, at home, in nursery or school. The assessment process takes around two weeks to complete. When all professionals have seen your child and evidence collected there will be a team meeting with parents when a decision whether to give a diagnosis is made. Ideally someone from the local authority education team should be present, though this doesn't always happen. The results may be a diagnosis of autism, no autism diagnosis or the team may adopt a wait and see approach and ask you to come back some months later because no clear decision can be made.

If an autism diagnosis is given, parents will receive a written report , and if appropriate the young person will receive a simplified version too. The report will spell out areas of strengths and areas of difficulty for the child. Parents will also receive an information pack giving information on autism as well as support groups..

What happens after diagnosis?

Once a firm decision is made, and unless your child has medical issues, generally speaking the involvement of the CDC ends. You may continue to be under the care of a Paediatrician, or you may be signed off. The CDC does not provide an ongoing support service. Ongoing support and intervention should be provided by the education services of North Yorkshire County Council.

Why a Diagnosis Can be Important

You may wish to go through the diagnostic process for the following reasons:

1 You feel it is a basic right

2 It would be helpful to find the right support group and the right support

3 It would be helpful to understand why your child is the way he/she is by providing a full picture of your child's strengths and needs

4 It is helpful in understanding the implications

5 Older children may wish to pursue diagnosis to obtain greater self understanding.

6 Accessing services may be more difficult without it. 

7 Often children's behaviour can vary greatly in different settings, seemingly coping well in school but struggling at home. Teachers may well not have a great deal of training or experience about autism nor see challenging behaviour. A diagnosis can help schools understand more clearly the needs of a child and help them work more closely with parents.

If it is not possible to achieve a diagnosis locally or a second opinion is required, for example because professionals do not agree, parents can ask their GP or paediatrician (preferable) to consider referral to another PCT eg Leeds or Sheffield, or to a specialist centre eg the NAS Lorna Wing Centre for Autism, Great Ormond Street Hospital  (GOSH) or the Elizabeth Newson Centre.  Both GOSH and Elizabeth Newson Centre will see children who cannot get a diagnosis due to lack of services from their home Child and Adolescent Mental Health Service (CAMHS). However, they require the home Clinical Commissioning Group to agree to fund the diagnosis, which may well be a sticking point. 

Elizabeth Newson Centre undertake mainly NHS work, but will assess children privately. As of 2012, the cost is £2615. For more details please see their website or call Jane Gray (office admin) on 01623 490879.They usually require reports from the parents, school and need assurance that the home CAMHS will be involved post diagnosis (perhaps another sticking point).

Adults (section to be completed)

(A draft strategy for adults is in development by NICE here.) 

Further Information

Adult
Signs / Red Flags for Autism (NICE guidelines here and guidance from US Government here)
MCHAT (pdf) Toddler Checklist - a screening tool for autism for children aged 30-60 months (with scoring instructions)
Video clips showing signs of autism here (free, registration required)

Good practice in diagnosis and education can be found in ASD Good Practice Practice Part 1 and Part 2, as well as the National Autism Plan for Children here

Further information can be found on the National NAS website including podcasts on what to do if you think your child may have autism and what to do after a referral.