Children and Young People Committee

CYP(3) PAP 26

Inquiry into Parenting Action Plan

Rresponse from the National Autistic Society Cymru

About us

NAS Cymru is the charity working throughout Wales for people affected by autism. We are part of the UK’s leading charity for autism. We were founded in 1962 by a group of parents who were passionate about ensuring a better future for their children. Today across the UK we have over 18000 members, 80 branches. NAS Cymru has six branches and over 800 members. We also link to a range of independent autism parent support groups. In Wales, we provide:

Information, advice, advocacy, training and support for individuals and their families

• Information and training for health, education and other professionals working with people with autism and their families

• Specialist residential, supported living, outreach and day services for adults

• Specialist schools and education outreach services for children

• Out-of-school services for children and young people

• Employment training and support and social programmes for adults with autism.

A local charity with a national presence, we campaign and lobby for lasting positive change for those affected by autism in Wales and across the rest of the UK.

What is an autism spectrum disorder?

Autism is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people.  It also affects how them make sense of the world around them.  It is a spectrum condition, which means that, while all people with autism share three main areas of difficulty, their condition will affect them in different ways.  The three main areas of difficulty (sometimes known as the 'triad of impairments’) are:

• Difficulty with social interaction.  This includes recognising and understanding other people’s feelings and managing their own.  Not understanding how to interact with other people can make it hard to form friendships.

• Difficulty with social communication.  This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.

• Difficulty with social imagination.  This includes the ability to understand and predict other people’s intentions and behaviour and to imagine situations outside of their own routine.  This can be accompanied by a narrow repetitive range of activities.

Some people with autism are able to live relatively independent lives but others may need a lifetime of specialist care.  People with autism may also experience some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours.  

Asperger syndrome is a form of autism.  People with Asperger syndrome are often of average or above average intelligence.  They have fewer problems with speech but may still have difficulties with understanding and processing language.  People with Asperger syndrome may not necessarily have learning disabilities but often have accompanying learning difficulties, including dyslexia.

We use the term autism here to cover all people on the autism spectrum, including autism, Asperger syndrome and other diagnostic terms used for autism spectrum conditions.  Over 500,000 people in the UK have autism.  Together with their families they make up over two million people whose lives are touched by autism every single day.  Despite this, autism is still relatively unknown and misunderstood.  That means that many of these two million people get nothing like the level of help, support and understanding they need.  

Our response

NAS Cymru welcomes the opportunity to respond to submit evidence into this short inquiry into the Welsh Assembly Government’s Parenting Action Plan. We are a membership organisation working to represent parents and carers who are living with autism on a daily basis. We receive over 40,000 calls per year (across the UK) to our Autism Helpline from people affected by autism, looking for information and advice on a whole range of issues. Therefore we feel we are in good position to comment on some of the general issues that parents of children and young people with autism face.

We would point out that we have not received any direct feedback from parents about the Welsh Assembly Government Parenting Action Plan, so cannot give you any information about the specific impact it has had. What we can tell you in this response is the extent to which some of the key proposals in the plan have been implemented in reality for parents of children and young people with autism. I hope that this will be helpful in contributing to your inquiry.

We also feel it is particularly important to respond at this time, given the recent launch of the Welsh Assembly Government Autistic Spectrum Disorder Strategic Action plan for consultation. We feel it is important to say here that we remain concerned about the lack of direct services and support the plan sets out for statutory authorities to provide in respect of support for parents and carers. For this reason, this mainstream plan remains important and relevant for parents of children with autism.

Information and advice services

NAS Cymru recognises the proposal to develop a bilingual helpline for parents and carers in Wales. However given the delay in establishing this, we believe that it would be useful to audit existing help lines and services in the first instance as to the breadth of information and support available to parents at present, to consider how resources could be channelled to help promote existing services and support to parents and carers and avoid duplicating information which is already available. For instance, NAS Cymru currently provides a large amount of information to families including a telephone, email and postal helpline; an advocacy telephone line for education related issues; a welfare rights service; a website which includes an Autism Services Directory to support parents to find local services and support; Signpost - a web-based service which tailors advice around an individual’s circumstances, for instance ensuring an individual has information about benefits they are entitled to and an information centre, which is able to provide tailored information not only to parents and carers, but also to practitioners on a whole range of issues. Our telephone help lines both have access to Language Line and many of our materials are available bilingually.

As a specialist provider of information and advice to families, we therefore feel that it might be more useful to consider how the services that organisations like NAS Cymru provide might be made more accessible to families across Wales. Advice and information services, as well as practical local support, are vital for parents of disabled children and young people, particularly following diagnosis. It is our experience that often families are left with no ongoing support or signposting to organisations that can assist them following a diagnosis. This can leave parents extremely isolated and confused, at a time when they are reeling from the information the diagnostician has given them about their son or daughter.

Children’s Information Services

We note that according to the Plan, information about 'special needs, including support groups for parents of children and with special needs/disabilities’ should be included in the information that local children’s information services provide. We cannot advise whether this is currently happening, however given the nature of the calls coming into our office, it would be appropriate to say that many people asking about local branches have heard about these through our website, or via word of mouth. We would propose therefore that more guidance should be given to local children’s information services about the type of information they should be providing and also about how they promote the service that they can provide. In order that details of local parent support groups like NAS Cymru branches, are better available to parents when they need this. There are currently six NAS Cymru branches in Wales. These are in Conwy and Denbighshire; Wrexham; South Powys; Carmarthenshire; Merthyr Tydfil and Cardiff and the Vale. In addition, we are also in contact with around 15 independent parent support groups from across Wales.

Support for specific groups of parents

It is essential that parents of children with autism spectrum disorders have access to autism-specific information to enable them to support their child effectively.

We welcome the commitment by the Welsh Assembly Government to adapt the Early Support Materials as developed in England (not currently detailed in the Parenting Action Plan). These materials are a valuable resource for families at diagnosis. Currently in England these materials are given to parents of children diagnosed with autism from 0-5 years. NAS Cymru developed the materials with DFES in England and recently undertook evaluation with parents as to their effectiveness in order to inform an updated version of the autism booklet. We would add that we would like to support the Welsh Assembly Government to develop the autism materials here in Wales, however as yet, despite making representations, we have not been asked to do so.

In addition, we feel that the Welsh Assembly Government needs to do more to consider developing post diagnostic support materials, particularly as there is currently no commitment to develop materials (beyond the Early Support materials) in the WAG Autistic Spectrum Disorder (ASD) Action Plan. Such consideration is important, as although many children with autism are being diagnosed earlier, others may not receive a formal diagnosis until well into their education. This can be particularly true of children and young people with Asperger Syndrome. However, as described above, even when a diagnosis is obtained post-diagnostic support services are poor and this impacts on the family who will struggle to know where to go and how to find the right support for their child.

Post Diagnostic Support

More emphasis needs to be placed on access to post-diagnostic support within the plan. Families require information about support services that are available to them, (e.g. NAS Cymru) in order that they can approach those agencies/ services when they feel ready. Some families need time to absorb a diagnosis before they feel ready to follow a support programme and support needs to be available to parents on a flexible basis so that they can access it at a time which suits the family.

Recommendations:

• The Welsh Assembly Government should work with the National Autistic Society Cymru to develop Early Support Materials for younger children with autism

• The Welsh Assembly Government should consider developing post diagnostic support materials for parents of children with autism of school age

• The Welsh Assembly Government should ensure that local authorities offer/support post diagnostic support programme to parents and carers in all areas of Wales

Point 7.14- NAS Cymru provides a free education telephone advice service called 'Advocacy for Education’. The service provides accurate information, quality support and advice on educational provision and entitlements to help guide parents of children with autism through education law and what can be a complex and difficult process. The service is provided by volunteers who offer telephone -based advice from their homes.

Recommendation

• The Welsh Assembly Government should consider producing an updated version of the 'parents guide to SEN’ with contact details of voluntary organisations such as NAS Cymru who offer tailored educational support to parents.

Child and Adolescent Mental Health Services

NAS Cymru would highlight here that despite the existence of 'Everybody’s Business’, the Welsh Assembly Government’s CAMHS strategy, the situation in reality for many families affected by autism, is that there can be little support until difficulties reach crisis stage. Parents can find it very difficult to access local CAMHS services, due to eligibility criteria which may prevent young people with Asperger syndrome in particular, accessing timely support. Parents have also highlighted long waiting times for referral; problems in assessment and a lack of knowledge of Autistic Spectrum Disorder as barriers to accessing appropriate support from CAMHS services.

There may be problems in recognising that a young person with ASD may also have mental health problems. CAMHS need to be aware that children with autism are more vulnerable to mental health problems. A third of children with autism also have another clinically recognised mental disorder, and 16% have an emotional disorder.  A quarter of parents report that their child has tried to harm or kill themselves.  Yet, there is a lack of CAMHS services for children with ASD or learning disability. This is often due to a lack of confidence and training among staff to work with children and young people with ASD.  Therefore staff need training and an understanding of autism and how it may impact on a child’s mental health.

Recommendations:

• All CAMHS workers need to have understanding of autism, using a tiered model with some having more in-depth knowledge, and practitioners at a regional level having specialist training.

• Families affected by autism should be able to access timely support from CAMHS teams

Access to local services including social care

There are also particular difficulties that young people with Asperger syndrome are currently facing not only in trying to access support from CAMHS but also services more generally, which need to be tackled urgently by the Welsh Assembly Government. NAS Cymru have been receiving anecdotal information from parents who have told us that some local authorities (particularly social services departments) are telling parents that they do not consider Asperger syndrome as a disability, therefore their son or daughter is not eligible for a service. This goes against guidance published by the Disability Rights Commission to determine questions relating to the definition of disability, under the Disability Discrimination Act 2005. This guidance not only clarifies that Asperger syndrome is a disability, but contains a case study of a young person with autism. The full guidance can be found at: http://www.drc-gb.org/documents/guidance.pdf 

 Recommendation

• The Welsh Assembly Government should issue a clarification note to all local authorities in Wales, confirming that Asperger syndrome is a recognised disability and that all decisions regarding eligibility for service provision would be taken with this fact in mind. Decisions about eligibility for a service should be based on need, rather than a label of IQ, Local authorities should also be aware of the ASD action plan in delivering local services.

Family Support

The needs of families affected by autism are complex. Few disorders pose a greater threat to the psychosocial well-being of family members than autism.  Research shows that parental stress and the impact on family life evolve over time and increase in severity at adolescence.  An NAS survey revealed that the burden of care for a child with autism extends well beyond the normal expectations of caring for a son or daughter at home.  In many cases families are excluded from "normal life”. Much of an individual family’s social life, including holidays, is destroyed. Even a trip to the shops can be a fraught and intense occasion with parents anticipating the disruptive behaviour of their child throughout the trip. Autistic behaviour can also result in sleepless nights and injuries to family members.  Brothers and sisters get stressed and this can lead to the growth of resentment towards the person with autism, sometimes resulting in the sibling leaving home to avoid the pressure.  Parents also face tremendous amounts of stress because they have to give so much time and attention to their autistic child and this often means that they are unable to give any significant time to each other. The strain that this brings to marriages is immense and many collapse altogether. Parents should be able to access timely advice and practical support to enable them to cope.

Recommendation

There should be an autism Family Services Worker to support children, young people and families in each area of Wales

Promoting participation, listening and responding to mothers, fathers, carers and children.

The notion of participation is set out on page 8 of the plan, in respect of involving parents and carers in developing activities to develop on the plan. NAS Cymru would note that this links closely with the notion of the involvement of parents and carers. The ASD action plan notes that local ASD co-ordinating groups should have the involvement of parents and carers. NAS Cymru is well placed to support local authorities identify local parent representatives to take part in these groups, which should also be considering local family support.

Recommendation:

• Local authorities should actively engage with parents of children with autism to support them to identify gaps in local provision and plan for future services, including family support

Conclusion

NAS Cymru notes the benefit of having a Parenting Action Plan for Wales. Although we cannot give direct feedback from parents and carers regarding the Plan itself, we can say that from our experiences of providing information, services and support to parents and carers of children and young people with autism that in practice the plan has not made a great deal of difference to the barriers they face. We feel that much more needs to be done to support parents and carers of disabled young people in Wales. Parents in Wales face daily battles to fight for the right services and support for their children and young people and more must be done to ensure that the right support and information is available and accessible, at the right time to prevent families experiences greater difficulties in the future, but also in order to ensure that children and young people with autism are able to be supported to fulfil their individual potential.