How do I get a diagnosis for my child?
If you suspect your child has autism or Asperger Syndrome, you will need a medical diagnosis to access appropriate help. The benefits of early intervention (starting from as early as age 2) are well documented, and so an early and accurate diagnosis will be to your child's advantage. From school age onwards, much specialist educational provision is dependent upon having a 'Statement of Special Educational Needs' (see 'Education' section for more information) and this will also require a diagnosis from a multi-disciplinary team made of clinicians, psychologists and speech and language therapists.
Generally within Haringey, if an autistic spectrum disorder is suspected, your GP or community health clinic, health worker, SENCO, speech and language therapist or educational psychologist will refer you to the local Child Development Centre (CDC) at St Ann's Hospital, St Ann's Road, N15 3TH. Tel: 020 8442 6746. Here a multi-disciplinary team (usually a paediatrician and a speech and language therapist) will examine your child at either one or more often two separate HAACs (Haringey Autism Assessment Clinics) and a diagnosis will be formed at the final or Stage 2 clinic. This will all take many months from the referral. A written diagnosis with a description of your child's main areas of difficulty will follow a few weeks after the final assessment clinic. You may receive a handwritten assessment on the actual day of the clinic also depending on which doctor you see.
For all children, the diagnosis will mean that your child will be added to the autism register held by the autism team, and their diagnosis made known to Children's Services. For under 5s, it may lead to you being offered a place on the 'Social Skills Group' run by the Speech and Language Therapy department for autistic children or children with a social-communication disorder, and it may propel you more quickly towards the Early Intervention Panel who allocate specialist pre-school places, and also get you a place on an Earlybird scheme run by the autism team which will teach you more about how to understand and manage your under-5 child.
For older secondary school age children, the referral may go to Haringey CAMHS rather than to the CDC.
The Child Development Centre (CDC) is based at St Ann's Hospital. Tel: 020 8442 6746. However, confusingly, the doctors who make the diagnoses are based for now at the North Middx Hospital, and are employed by Whittington Hospital. (previous to 2011, they were employed by Great Ormond ~Street Hospital). The secretaries for these doctors can be contacted on 020 8887 4374 and 4378. They are also based at North Middlesex Hospital. Any correspondence that goes to the CDC will reach the doctors as a mail bag goes daily between the sites. Sue Davies is the Specialist Health Visitor based at the CDC Tel 020 8442 6336/07989 852887.
I'm struggling to get a referral - what now?
If you're finding it difficult to get a referral for your child, being assertive and persistent can help. You might also find the following tips useful.
-Before your appointment, prepare notes on what you want to say to your GP.
-Keep a diary to record any unusual behaviour by your child and how often it happens.
-Give your GP some information on autism from The National Autistic Society or encourage your GP to contact the society's information centre (0845 070 4004 or email email@example.com) if they have any questions about the condition.
My child has a diagnosis, now what?
There are a number of Haringey authorities who may now enter your child's life to provide support. All are over-stretched and recent government cuts have done nothing to improve the situation, and you may at times feel like you need to become a lobbyist more than a parent to get the right help, but don't give up, you are your child's main advocate and the help can be there if you keep at them long and hard enough.
However - there is also a lot you can - and will have to - do yourselves - please educate yourself about your child's autism, extraordinary abilities and extraordinary difficulties. The more you learn about autism, the more fascinating you will find your child. Learn about the causes of behavioural problems, common everyday problems and how to improve communication. You can make life so much easier for your family and for your autistic child if you do. See the back of this pack for some starting ideas.
The main areas of state-funded provision and responsibility are divided between the Local Authority in the Children and Young People's service which is made up of Education Services and Social Services and the Health Service
Education Services - The SEN (Special Educational Needs) department are responsible for providing for inclusion in mainstream nursery care, Under 5 centres, pre-schools, primary and secondary education, and also placements in specialist in-borough and out-of-borough schools, Earlybird programme, and supporting some home-schooling programmes. Statements of Special Educational Needs (see page 8) also fall under the umbrella of the local authority's SEN department. Education services also fund the Educational Psychology service who assess children for statementing and annual reviews, and the 'arms length' Parent Partnership Service, an impartial service who can provide advice and support to Haringey parents having problems obtaining a statement or accessing appropriate education for their child.
Social services - The Disabled Children's team fund home-centred advice and short breaks, HINTS (Home intervention Service), CDP (Community Development Projects), FamilyLink, and 'Breathing Space' a respite service for children with autism. (see also Black and Minority Ethnic Carers' Support Service in Social Services section later on in this pack).
Health Services - provide diagnosis, on-going health care, speech and language therapy, health visitors, and occupational therapy.
The following pages will give more information on these authorities and the available provision. In addition to state provision, there are a number of local parents' support groups, all of whom may be able to help with advice and support.
There are a number of different official support strands:
Under 5s may be invited to join a social skills group offered by the speech and language therapy service to help assess their educational needs and select a pathway to a suitable nursery provision or reception class.
A one-off post diagnosis autism session is offered 3 or 4 times a year at the Child Development Centre to introduce parents to the autism school team, the speech and language therapy team and the specialist social worker plus a member of Haringey Autism.This is organised by Sue Davies, the specialist health visitor.020 8442 6336.
For children under 5, there are periodic Earlybird courses run by the autism team. Sign up for this c/o Linda Nevin-Drummond or the autism team on 020 8489 5084 or email firstname.lastname@example.org. Also from time to time, the autism team arranges a series of meetings at local schools for parents of over 5s
For parents of children aged 5 - 12 diagnosed in the past 18 months, the NAS run occasional 6 session courses called help! at various locations around London. Courses discuss the condition, behaviour management, communication etc but also education and transitions. The Haringey Autism newsletter will always carry details of forthcoming Help! courses so make sure you are on the mailing list. Cuts mean that the future of the NAS Help! service is unsure at the time of writing.
Join Haringey Autism - your local NAS group and link up with other parents - always a great means of support and information sharing!
(Going private - The London Children's Practice - autism plus+ service. are a private provision offering a package of post diagnostic interventions such as speech and language therapy and report writing for tribunal. Social and communcation nursery groups, sensory integration, behaviour strategies etc. Tel 020 7224 1156.
- The Hope Centre offer a range of support- see their website)