Where Can I get Help? A Glossary of Terms You Are Likely To Encounter on the Long Road to Diagnosis

It is most commonly the parent who realises that something isn’t quite as it should be with their child – long before their first day at school.

Getting access to specialist services can be a painfully slow process, even taking years before a final diagnosis is made.

During this time, you may hear different terms of specialists bounced around, all of whom have long waiting lists and with many who are quite happy to pass your child’s case on to someone else.

This is where polite persistence is essential and knowing who you want your child to be assessed by is key.

One of the best ways to get the help you need is to access peer support. Parents who have already been down the route with their child can offer practical advice about how to get through the door of the community paediatrician or give you some empathy as you explain how long you have waited to see an occupational therapist.

Finally, remember, just because your child’s issue doesn’t happen in school does not mean a problem does not exist. If you are sure your child has a need or condition that is being missed, don’t let it go.

GP
A GP is usually the first point of contact for most parents with concerns. They should always refer you on to specialist services, and in this respect, you may find your health visitor or school nurse better placed to spend necessary time with you filling in the complex referral forms.

Health Visitor
Health visitors are trained nurses who specialise in supporting and working with families until their child reaches their fifth birthday.

The health visitor can offer advice on minor illness and also make further referrals to specialists, including speech and language therapists.

School Nurse
Once your child has reached statutory school age, the school nurse will take over from the health visitor. The school nurse will also be able to make referrals to services such as CAMHS.

Child and Adolescent Mental Health Services (CAMHS)
CAHMS is a service aimed at helping children who are experiencing difficulties with aspects of school, family life or life in general.

It can be a long arduous process getting your child to be seen by CAHMS and extreme persistence is likely to be necessary.

Community Paediatrician
Community paediatricians are specialist doctors, working with children whose health problems create issues in every day life.

These doctors will carrying out assessment of children with problems affecting their development such as autism, ADHD and learning disabilities.

Occupational Therapist – OT
An OT, works with children and adults for whom specific activities cause difficulty. This could be help with writing, using sensory aids, helping with coordination difficulties.

Speech and Language Therapist – SALT
SALT helps children and adults with communication difficulties, such as difficulty speaking, difficulty understanding language or difficulties using language.

Educational Psychologist – Ed Psych
An Ed Psych, is a person who is trained in psychology, particularly understanding about the way children behave, think and learn. They may also be a qualified teacher. They can be called in to find out why children are having difficulties in school.

Makaton
Makaton is a language programme which uses signs, symbols and speech to help people communicate. Signs are used with speech in spoken word order. Signing can helps non-verbal children or those with communication difficulties to communicate their needs.

Picture Exchange Communication System (PECS)
This is a form of communication using cards with pictures on allowing a child to express their needs. The system was originally designed to help non-verbal children with autism, with the system of cards becoming progressively more difficult until whole sentences can be communicated.

Special Educational Needs Co-ordinator – SENCO
The SENCO is the person at your child’s school who will over see the day to day running of the school’s SEN policy. They should work closely with parents, carers, school staff and outside agencies, to provide an inclusive environment. They should also be making sure that children with SEN are being given equal opportunities as well as quality teaching with their needs in mind.

Common Assessment Framework (CAF)
Where a CAF panel still exists, the voluntary system aims to work with children and their parents/carers, to identify extra support that may be needed. A lead professional will put together all the problems that you and your child are experiencing, which will then go before a panel of professionals. An Action plan will be agreed with you, aiming to get everyone involved with your child working together and offer the right support before needs increase.

Individual Education Plan (IEP)
An IEP is drawn up by the school to help them and the parent identify a child’s needs, especially areas of difficulty.

It should include; learning targets within time frames, who will support the child and how, methods used and how the parent can support this.

The IEP should be discussed with the child and the parent or carer given a copy. Progress meetings should be made with further targets set.

IEPs should also reflect advice given by external specialists.