Complex Communication and Autism

We are currently not able to provide autism assessments as we do not have the right mix of healthcare professionals to be able to offer a safe and standardised autism assessment. This is because there is a shortage of a certain type of skilled professionals across the country and we have been affected by this in Leeds. This is why we have taken the difficult decision to stop the assessments until we are able to replace the skilled professionals. We may need to continue to stop assessments until we are able to recruit the right team for a safe and standard assessment to take place. We will write to families of children waiting for a Complex Communication and Autism assessment to update them when we have clear plans in place for resuming assessments.

We expect families and professionals will find this news troubling, as we have ourselves. Please know that we will continue to use our existing staff and capacity to support your child’s needs in the interim.

We have put together information to support your child while on our waiting list before assessment can re-commence again.

• 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.

• QVideo toolkit

   

  • Developing Communication - Interacting 
  • Developing communication - Use of visuals to support communication/interaction
  • Developing Communication - Expression
  • Supporting your child with daily activities and sensory differences
  • Supporting your child with behaviours that challenge
  • Supporting your child with feeding
  • Supporting your child with sleep
  • Supporting your child with toileting
  • Social and financial support for you and your family
• QComplex Communication and Autism Assessments

  As part of the Child Development Team, the Integrated Children’s Additional Needs Service (ICAN) provides a complex communication and autism spectrum disorder (ASD) assessment and support for you and your family following diagnosis, for pre school children. We consist of Clinical Psychologists, Speech and Language Therapists and Specialist Health Visitors.

  Who is it for?

  Pre-school children who have additional needs and have been referred by a Paediatrician.
  Autism is a spectrum condition which can impact on children in very different ways. Our service aims to meet the standards for the diagnosis of autism spectrum disorder set out by the National Institute for Health and Care Excellence (NICE), allowing each child and their family to be supported with individual needs.
  Autism is a developmental disability that can affect how a person communicates with, and relates to, other people around them. People with autism may have difficulties with social interaction, social communication and with social imagination.
  If you have concerns about your child’s development you could speak to the following people and ask their advice about whether to seek referral for an autism assessment:

  • Your GP
  • Your Child’s Nursey/School or SENCO
  • 0-19 Public Health Integrated Nursing Service
  • Other Health Professionals involved in your child’s care

  What do we offer?

  Upon referral, pre-school children will be offered a clinic appointment with a Paediatrician. Some children may have already been seen by a Speech and Language Therapist but if they haven't they will also be referred for a speech and language assessment. Children will also be referred to the Children’s Audiology Team for a hearing test.
  Following the Paediatrician appointment, if they feel it is appropriate they will speak to you and refer your child to us for assessment.
  You will be allocated a lead professional which is usually a Speech and Language Therapist or Clinical Psychologist. They will gather all elements of your child’s assessment together and provide you with a report of the outcome.
  During the assessment we may gather information from other professionals who are involved in the child’s care and wellbeing which may include:

  • Nursery/School staff
  • 0-19 Public Health Integrated Nursing Service
  • Other healthcare professionals including speech and language therapist

  This assessment also includes;

  • A consultation with a specialist 0-19 Public Health Nurse who will help you understand more about Autism in children, provide information on the support available and help you work on specific areas
  • A specialist speech and language/clinical psychology assessment

  Following the different clinical consultations described above, your lead professional will bring your child’s case to a team meeting where a diagnosis will be agreed or we will decide that further assessment is needed. Your lead professional will then provide you with feedback and a report.
  We work in partnership with you and your Public Health Integrated Nurse and we will invite them to join us at the assessment and follow up appointment so they can continue to support you.