This page focuses on the typical pathway that a family follows when they become aware that their child or young person may have additional needs. All our practitioners have experience of having a child assessed and diagnosed with additional needs.

Start of the pathway

The pathway to a diagnosis begins for most families many months, sometimes years before a formal assessment is completed. This varies according to the condition or disability your child may have.

Becoming aware that your child has additional needs can be a very difficult time emotionally for a family. Sometimes it might be you as the parent/carer who first becomes concerned about your child’s development. Or it might be someone else who knows you child or teenager that raises the concerns. Either way knowing, what needs to be done after these concerns have been raised can often be confusing and daunting.

Parent/carers can have a range of feelings when they first become aware that their child might have a learning difficulty or a disability. For some parents, it’s absolutely heartbreaking (even if they feel guilty for feeling that way). For others, it’s actually a relief. For many more it’s a mixture of the two. However parent/carers feel about it, the step between suspecting and seeking a diagnosis is a big one.

Next steps

If you think that your child may have additional needs, you can discuss these concerns with a range of different professionals who know your child. For example your child’s nursery or school teacher, the SENCO at school, your health visitor or your GP. It is often best to choose the professional who best knows your child. In most cases this will be a member of staff from your child’s nursery or school. If you feel that your concerns are not being heard it may be helpful to talk to another professional who knows your child.

The process of referral and assessment varies according to the age of your child and the difficulties they are experiencing. It can also vary according to the area of Berkshire or neighbouring counties that parent/carers live in.

The education or healthcare professionals who are supporting your child will be able to advise you about the process in your area. If you would like further information or clarification, some parent/carers find it helpful to contact our Diagnosis Support Service at this stage.

Formal assessment

The wait for a formal assessment can be long, particularly for conditions such as autism and ADHD. This time of uncertainty can be particularly difficult if the waiting time is expected to be many months.

However there are a number of support and information services that families can use whilst they are waiting for their child’s assessment appointment. In addition to the one-to-one Diagnosis Support service, we offer workshops that are specifically designed for those waiting for an assessment appointment on the Autism and ADHD pathways.

Some parent/carers may find it helpful to know that local and national NHS managers are working hard to reduce the waiting times for assessments and to ensure families are receiving the support they need whilst they wait.

After the assessment

A formal diagnosis of additional needs or a disability can be a real shock to parent/carers. This is true even if you’ve suspected it for a long time. Not only does a diagnosis open doors for you as a family, it can sometimes feel like it closes others too both now and in the future. Knowing that your child will almost certainly face increased or more complex challenges in their life can be very distressing to think about.

Some families will receive the news that their child or young person does not have the condition for which they have been assessed. They may be referred to another assessment pathway or to other services that can offer support. This outcome can also be distressing for parents. You’ve probably waited a considerable time for the diagnosis to be made and mentally prepared yourself for a diagnosis to be given. They may face waiting for further assessments or be unsure where they can get help for their child.

There are a range of support services that are available to support families when they receive a formal diagnosis for their child/young person. Some are national services, others are local. The professionals who completed the assessment with your child will usually provide you with details of these.

Parenting Special Children’s Diagnosis Support and Helpline Service is able to offer support to parent/carers who have received a formal diagnosis. We can also offer information about possible next steps for parent/carers who don’t receive the diagnosis they were expecting.

Courtesy of www.ambitiousaboutautism.org.uk, Nicky Clark is a disability rights campaigner with two daughters (Lizzy and Emily) on the autism spectrum. In this film she talks about their diagnosis and the impact it had on the family.

Berkshire CAMHS have produced a short video which explains about the Diagnosis/Assessment process.

Helping you understand...
Charlie Taylor
Helpline Service Manager