Waiting times for Complex Communication and Autism Assessments for pre-school children are long. We are developing a Needs Led service that will cater to each child’s unique needs. This support includes a series of workshops designed to empower you with strategies and insights to support your child’s development. The workshops will be offered online or in person. Your child will also be invited to attend an Early Communication Group which is organised by the Speech and Language Therapy Service.

The ICAN service must prioritise who we can provide an assessment to, as we do not have enough resources to provide an assessment to everyone who has been referred in a timely way. Not all children will be able to receive an assessment from our assessment team. We will contact you as soon as we are able to offer you an assessment or further support.

Prior to the assessment starting, we will gather information about your child’s strengths and needs from parents/carers and childcare or nursery staff. We will also use information from other professionals that your child may have seen. For example, a speech and language therapist. We will then decide how best to complete the assessment. This could include the following steps: Multi-disciplinary team discussion, play based assessment, feedback.

We have put together information to support your child.

• Your child is eligible for support that meets their needs in their children’s centre, nursery school or other learning setting, without the need for a diagnosis of autism. To access support, you can ask to speak to the SENCo (Special Educational Needs Coordinator) of your child’s setting. SENCos are teachers who have additional responsibility as leaders of SEND (special educational needs and disabilities) in their setting. They have oversight of SEN (special educational needs) provision and work with other staff in the setting and external professionals. Some needs can be met universally within the classroom, and some require additional targeted interventions or some more individualised support.
• Please watch a short video explaining the SEND Graduated Approach within Leeds, please visit https://leedslocaloffer.org.uk/#!/model/page/service/34148.
• National Autistic Society https://www.autism.org.uk – This national charity has many resources which will be of help at any stage of the assessment and diagnostic journey.
• https://www.mindmate.org.uk/nd – This is a local website with information and resources for neurodivergent (ND) children and young people, with or without a diagnosis of a specific condition. Neurodivergent is a word that is being used to describe children, young people and adults who have characteristics of autism and/or attention deficit hyperactivity disorder (ADHD).
• Leeds Local Offer https://leedslocaloffer.org.uk/#!/directory – This website provides information for children and young people with special educational needs
• SENDIASS can offer free, impartial and confidential advice to families to help with concerns or questions relating to disabilities – sendiass.leeds.gov.uk. You can also access a video explaining the SENDIASS service here : www.youtube.com/watch?v=OhAIOB25iXY
• You can share your experiences through the Leeds Parent Carer Forum via the online form on their website – https://www.leedsparentcarerforum.co.uk/contact-us/

You may wish to use your right to choose a different provider for the assessment. The right to choose a provider is, in some areas of healthcare, covered by legislation and is set out in more detail in the NHS Choice Framework.

If you wish to be referred to another provider you should:

• decide which other provider you want to assess your child
• make an appointment for your child to see their GP and ask them to make a referral to your chosen provider
• if your child’s nursery has completed a Nursery Questionnaire that was requested by ICAN you can take a copy of this to your GP appointment as it will have a good description of your child’s needs.
• if the other provider you have chosen is commissioned by the NHS your GP may be able to refer you directly to them.
• if they are not commissioned by the NHS your GP will not be able to refer you, but will give you information about the other choices available that they are aware of.

Here are some things to think about that will support your discussion with your GP.

1. What are your child’s strengths? What do they like doing?
2. How does your child understand the world around them? Do they understand routines? Do they respond to instructions? Do they understand non-verbal cues such as gesture? Do they understand danger?
3. How does your child interact with other adults and children? Do they show interest in and respond to others? Do they have friends, understand feelings, take turn and share, play interactively?
4. How does your child communicate with you and other people? Do they use words / non-verbal cues such as gestures? – (pull you by the hand, use waving, do they understand/use facial expression/eye-contact) Do they use words? Can they get frustrated when they cant get their message across – what does this look like?
5. If your child uses words, how do they use them? To make comments/label things/get their needs met or in a two way conversation. Do they use learnt phrases or repeat what people say. Are they able to combine gestures and words to get their message across?
6. What does your child play with? How do they play with it? Is it repetitive? Do they explore toys through banging, looking closely at toys or mouthing them? Are they able to play with a variety of toys or focus just on one activity?
7. Is your child interested in certain aspects of toys/objects? Such as smell/feel/taste/looking at it in unusual ways? Does your child avoid/react negatively to certain activities/toys?
8. How does your child cope with changes to routine and unusual events? (such as a Christmas / birthdays)?
9. Does your child have to have certain routines? E.g. walking around the room in a specific way, having to have or hold a particular object / toy.
10. Does your child have any repetitive movements? Such as whole body/finger/hand movements.
11. Are there any strategies that you have found helps your child? (calming activities/ places they enjoy, use of objects / pictures, having routines)
12. Are there any other professionals involved in your child’s care? (Paediatrician, nursery / setting staff)

It is also important you know that the waiting times at other providers may not be shorter than the current waiting time at Leeds Community Healthcare NHS Trust. At the moment children on the waiting list are waiting for a maximum of 18 months in our service. Other providers will offer a diagnostic assessment but will not be able to provide ongoing support. After the assessment they will refer your child back into the Leeds system if this is required. We are keen to continue to serve our families within the best of our abilities and will continue to keep your child on the waiting list until we are able to change the stop on assessments.

Parent resources

Please find a tool kit of video links below designed for families of children with complex communication needs or autism.

Each video lasts between 20 minutes and 40 minutes and is best viewed on a laptop or smartphone.