Distracted

All About Diagnosis

Getting a formal autism diagnosis can mean access to the right support.

If your child is on the autism spectrum, getting a diagnosis, and a better understanding of their needs, can be a real positive move. Screening tests online and via phone apps but should not be used as an alternative to a proper assessment and diagnosis.

We know that this can be a really worrying time for you and your family and it's important to know that you're not alone, that we're here to help contact us we can point you towards any local help and support within the North West area.

The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".

Children can be diagnosed as autistic when they’re quite young, in some cases by the age of two. But not everyone is diagnosed so early in life. Many children may to not get their diagnosis until they are older, some may not get theirs until they are an adult.

Some of the main signs that a child may be on the autism spectrum may include:

  • not drawing their parents’ or others’ attention to objects or events
  • carrying out activities in a repetitive way, for example always playing the same game in the same way, or repeatedly lining toys up in a particular order
  • resistance to change or doing things differently
  • emerging difficulties with social interaction and social communication
  • behaviour such as biting, pinching or kicking themselves or others, pica (putting inedible items in the mouth such as carpet etc).

Getting a referral

You may have reservations about pursuing a diagnosis for your child. This is your personal choice, but often a diagnosis can bring a sense of relief and help both you and school staff to better understand your child’s needs and how to meet them. It can also help your child by enabling them to identify with their autistic peers. If you are unsure about pursuing a diagnosis, it may still be a good idea to ask for a referral as you may have a long waiting time for an appointment. This will mean that you are not delaying the process while allowing yourself time to give it more thought.

Make an appointment with your GP (or health visitor in the case of young children).

Take along a list of behaviours and characteristics that make you think your child might be autistic. It could be useful to keep a note of behaviours or videos leading up to any appointments after the referral.

Once your GP or health visitor is convinced of your child’s difficulties, your child should be referred for a formal assessment (diagnosis). You may have to wait some time before you actually go for the assessment there are long waiting lists. In the meantime, your child could be referred to other teams such as a speech and language therapy, occupational therapy, or other local services. These professionals might help with practical strategies you can do to help with any of the difficulties you may be facing.

Your child should have a multi-disciplinary diagnostic assessment this might include, for example, a paediatrician, a speech and language therapist and a specialist psychologist.

If your child is referred to an individual professional, it’s important that they are experienced in diagnosing autism.

Private assessments

Private diagnosis is an option, if you can pay for one, and can reduce the long waiting time. The costs of private assessments can vary, so it’s a good idea to phone several services to ask about costs, what this pays for and whether any follow-up service is offered.

Some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, we suggest that you stay on the waiting list for an NHS assessment even if you also decide to go privately.

North west diagnostic services:

Greater Manchester

Bolton:

Bolton Child and Adolescent Mental Health Service (CAMHS) www.boltonft.nhs.uk 01204 390659 0-18yrs

Bolton Team Around the Child http://www.boltonft.nhs.uk 01204 463500 0-16yrs

Bury

Bury Child Development Centre (CDC) 0161 778 3031 0-19yrs

John Denmark Unit www.gmw.nhs.uk 0161 772 3400

Manchester

Manchester and Salford Child and Adolescent Mental Health Services (CAMHS) www.cmft.nhs.uk 0161 203 3251

Clinical Partners http://www.clinical-partners.co.uk 0203 761 7026

Pennine Care CAMHS (Bury, Rochdale, Oldham, Stockport, Tameside and Glossop)  www.penninecare.nhs.uk

Leonard, Kate (Dr) www.claritymanchester.co.uk

Trafford Extended Service (TES) http://www.gmmh.nhs.uk 0161 357 1210

Salford

Salford Community Paediatricians (CDC)  0161 212 5583

Stockport

Roundway Centre http://www.roundwaycentre.org.uk 0161 440 8685

Stockport Child Development Unit (CDC) http://www.stockportcypdisp.org.uk/ourservices/cdu/

Wigan

Wrightington, Leigh and Wigan Child Development Team (CDC) www.wwl.nhs.uk 01942 482468

Warrington

Spectrum North West www.spectrumnorthwest.org 07800 783050

Warrington Child Development Centre and Community Paediatricians www.bridgewater-warrington.nhs.uk 01925 867867

Lancashire

Burnley

Action for ASD – Adult Diagnostic Services 01282 415455 http://www.actionasd.org.uk This email address is being protected from spambots. You need JavaScript enabled to view it.

Preston

Brief Therapy Support Services Ltd www.btss.org.uk 01772 200589

Broadoaks Child Development Centre (CDC) http://www.lancsteachinghospitals.nhs.uk 01772 621062

Blackpool

Clare Williams Therapies https://clarewilliamstherapies.co.uk/ 07951 278436

Blenheim House Child Development and Family Support Centre (CDC) www.bfwh.nhs.uk 01253 951615 Blackburn

East Lancashire Community Neurodevelopmental Paediatrics www.elht.nhs.uk 01254 732922 / 01282 803424

Morecambe

Lancashire Child and Adolescent Mental Health Services (CAMHS) 01524 834140

Merseyside

Southport

Southport Community Child Health (CDC) 01704 511933

St Helens

psychologist.uk  http://www.psychologist.uk 0844 357 8309

St Helens Child Mental Health Service (CAMHS)  01744 454368

Liverpool

Liverpool Asperger Team www.merseycare.nhs.uk

Lancaster

Longlands Child Development Centre (CDC)  01524 34331

Cumbria

Barrow-in-Furness

Community Paediatrics, Atkinson Health Centre Barrow 01229 845953

Carlisle

Cumbria Child Development Services (CDC) 01228 608112

Widnes

Halton

Woodview Child Development Centre (CDC)

Multiple locations

Clinical Partners

The diagnostic assessment

Here's what you can expect to happen on the day of the assessment and soon after.

On the day

In a multi-disciplinary team are likely to assess your child separately and their findings are then brought together by the team leader to inform the diagnosis. This may mean you need to go for several appointments and it may be some time between appointments or they may all sit in on an assessment and assess together.

Different diagnosticians use different methods to diagnose autism, but there are guidelines that they should follow:

The National Autism Plan for Children (NAPC) says how a multi-disciplinary assessment should be carried out. It should include:

  • reports from all settings (eg school, nursery)
  • an autism-specific developmental and family history
  • observations in more than one setting
  • cognitive, communication, behaviour and mental health assessments
  • an assessment of the needs and strengths of all family members
  • a full physical examination
  • tests and assessments for other conditions where appropriate.

The team should explain to you the reason for each test or assessment. You should be given plenty of time to ask questions. Don’t be afraid to ask for explanations or clarification if you need them.

The diagnostic report

The diagnostician will tell you whether or not they think your child is autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.  Diagnostic reports can be difficult to read and understand in places. You can call the diagnostician to talk through any parts of the report that you find unclear. The report should give a clear diagnosis. Phrases such as ‘has autistic tendencies’ are not very helpful because they imply that a child is not autistic. This can cause problems when trying to access autism-specific support.  It is very important to understand the child's individual profile of needs. The report may say that your child presents a particular autism profile, such as an Asperger syndrome or demand avoidant profile, and may give recommendations for support.

Post-diagnostic support

An autism diagnosis can be difficult to come to terms with. You may be coping with a condition you know very little about and trying to find new ways for everyone to live together and feel supported. Some professionals offer a follow-up service, but what this includes varies. It can mean regular visits to monitor your child’s progress or telephone advice. An autism diagnosis can also come as a relief, to you and you young person – it may give you some closure and a clearer path to follower – however you feel about your/their diagnosis do know there is support out there.

Your child is the same person they have always been. Now that you know they are on the autism spectrum, you can begin to better understand their needs, arrange the right support and help them to maximise their potential, This is important for autistic children, who can benefit from appropriate, sometimes intensive, support from an early age. It’s also important for families, who may benefit from services. A diagnosis can help your child to get autism-specific support, but this doesn’t happen automatically, you may have to ask and enquire about it and support can take time.

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