The National Autistic Society
The National Autistic Society is the leading UK charity for people with autism, including Asperger syndrome, and their families. We provide information, support and pioneering services, and campaign for a better world for people with autism.
Every year, thousands of people affected by autism get involved in our campaigns, and together we’ve achieved some crucial breakthroughs. With public services like schools, social care and benefits under huge financial pressure, we need your help more than ever to ensure people with autism and their families get the support they need.
New Campaign Campaigns
Reduce Autism diagnosis waiting times for children in KirkleesMy son 3 ½ year old son Fredi has been waiting a year and half for an autism diagnosis, and I know of many other families who have been waiting for more than two years. There are over 240 children waiting for an autism diagnosis in Kirklees. Over 190 of them have been waiting longer than the 3 months recommended by national guidance, and some have been waiting over two years. Only 2 children a month are currently receiving a diagnosis. I am having to pay thousands of pounds for my son to receive private support for his autism because I can’t get support through the NHS. Other desperate families are resorting to spending £3000 pounds for their children to be diagnosed privately. A diagnosis is a gateway to support, and without a diagnosis, it will be hard for Fredi to get the support he needs at school or to be able to access activities for children with disabilities. A late diagnosis can affect children’s development, and may have a knock on effect throughout my son’s life. Children can be diagnosed with autism when they’re quite young, in some cases from the age of two. Children are referred for an assessment by their GP, and should be seen by a team of professionals, who will use questionnaires, interviews and observations to decide whether a child has autism. They can also offer advice to parents on how to manage their child’s autism, and can direct them to other services who can support the child and their family. In Kirklees, the child and adolescent mental health services (CAMHS) are responsible for autism diagnosis. CAMHS workers are having to do autism assessments alongside their day to day work supporting children with mental health problems. Last year, the service was given £360,000 to bring down the waiting list for autism diagnosis. A specialist team including a paediatrician, psychologist and speech and language therapist was hired to complete diagnoses and diagnosed 60 children. The team was disbanded in March when the money ran out and parents are left with the prospect of waiting years for a diagnosis for their children. We want: • A dedicated unit to be set up to diagnose children with autism in Kirklees • Additional funding and staff to be put in place as a matter of urgency to reduce the waiting list for autism diagnosis in Kirklees1,005 of 2,000 SignaturesCreated by Emma Shepherd
Act Now: we need an Autism Act for WalesWales has had an autism strategy since 2008 and much has been achieved. But we think that people with autism in Wales deserve more. Six years on, children and adults with autism still struggle to get a diagnosis and patchy support means life for many families remains a daily struggle. The Welsh Government have stopped giving ring-fenced funding to local authorities to deliver the autism strategy. Autism seems to be slipping down the Welsh Government’s agenda. An Autism Act would make it a top priority once again. Sign our petition to support our campaign, Act Now: An Autism Act for Wales.5,340 of 6,000 SignaturesCreated by Meleri Thomas
Reinstate Child and Adolescent Mental Health Services in Kingston upon HullMy daughter Maisie has autism, and is in a mental health unit in Manchester. I have to take an almost 200 mile round trip to see my 14 year old daughter, because this is where the nearest available bed is. My child is ill, she is in a hospital miles away from home. As her Mum I would expect to see her, cuddle her and reassure her every day. As her Mum I need to be there when she needs me. As her Mum I should be able to hold her hand through her recovery. As her Mum, not being able to do so is heartbreaking. Trying to sleep at night, knowing my little girl is so far away, alone and homesick is harrowing. I’m exhausted, physically and mentally and I feel helpless. Maisie says ‘It’s horrible, I hate being so far away from home. I don’t get to see my Mum everyday. Other local kids get to see their Mums and Dads everyday. It’s not fair.’ Inpatient mental health units are for children whose mental health needs are so severe that they need round the clock support from mental health workers. Children can be in this unit for a few days or a few months, and is a distressing time for both the child and their family. It’s made even worse by being so far away. Dozens of children from Hull and East Riding have been sent to inpatient units far from home since the Hull unit closed in 2013. This could be avoided by having a unit in Hull again. These vulnerable children need their families around them at this frightening time. NHS England make decisions about which areas have inpatient units for children. Their own research showed that 18 more beds were need in the wider area, but these beds were added to inpatient units that already exist in Sheffield and York. This means that the nearest unit to Hull is still 42 miles away, and families remain far away from their children. We want: • NHS England to recommission an inpatient unit for children with severe mental health issues in the Hull area • Immediate support for children experiencing a mental health crisis, at any time of the day or night.18,030 of 20,000 SignaturesCreated by Sally Burke
Save autism services for young people in West BerkshireOasis and Befriending are essential to the wellbeing of our autistic children and are a lifeline for them and their families. They help them to learn how to socialise, make friends and to try activities like shopping, bowling or swimming – things that other kids often take for granted. Autistic children are not able to take part in these normal, everyday activities without support and understanding from people trained in autism. Young people with autism are very socially isolated and need expert help to learn social skills and to be around other people. The Oasis Club and Befriending staff have specialist training and experience in autism which is essential in order to communicate with and support children with autism. Without these schemes, autistic children in West Berkshire will have nowhere to go. They will be denied what every child should have - a life with friends where they get to go out and do things in a safe environment with people who understand them and their differences. “Our son had to be home educated for a number of years when depression and anxiety threatened to overwhelm him and the Oasis Club was particularly crucial in those years as his only opportunity to mix with other kids, and our only chance in the week to re-charge our ﬂagging batteries. Oasis has been the single biggest factor in his development from isolated, lonely and unhappy boy to the conﬁdent, sociable and happy young man he is today.” We need your support to reverse this decision and ensure children with autism continue to have access to essential services. Please sign this petition to tell West Berkshire Council: • Not to shut down the Oasis Club • Not to shut down the Befriending scheme And to • Keep funding short breaks services for children with autism Please help us to stop West Berkshire Council from closing down these vital services for autistic children. The more people who sign the petition, the louder our voice. With thanks, Kate Lo, West Berkshire Branch of the National Autistic Society2,473 of 3,000 SignaturesCreated by Kate Lo
Save our autism services in HaringeyMy 22-year old son James – who has autism and severe learning disabilities – is one of many vulnerable disabled adults who rely on these services. Cuts in support services will have a devastating effect on the lives of all these people - like my son - who are unable to speak up for themselves. Haringey Council plans to cut millions from their budget, with services for disabled and the most vulnerable people bearing the brunt. Just before Christmas I found out that the Council has started a very short consultation about autism and day centre service closures. Haringey Council sent a document to the disabled people who use the services. However, it was only sent out a few days before Christmas and failed to mention some key points. The document did NOT mention the plans to shut three of only four remaining day centres. How can seriously disabled people have their say if they haven’t been clearly told what the plans are? This shows that Haringey are not conducting this consultation in a fair or clear way. My son James needs specialist support 24/7 to keep him safe and to help him to take part in everyday activities, like going to the shops or swimming, that give him some enjoyment in life. If he does not get this support he gets anxious, starts hitting himself or banging his head on the floor. And I am sorry to say, he will attack others too. There are so many people like James in Haringey, who rely on day centres and support services to give them safety and stability in their lives. If these cuts go through I fear for the future of my son and many people like him. Without these essential support services, their future looks bleak. Please help us to stop this from happening. Haringey Council wants to shift the burden of care for people like James back on to families and carers. But only the most severely disabled are currently getting services, and many families will not be able to cope without this support. I want your help to say to Haringey Council: • Don’t close the three day centres for people with disabilities (including the only dedicated autism day service) • Don’t cut care and support packages for adults with the most complex needs • Don’t cut social work staff7,059 of 8,000 SignaturesCreated by Mary Langan