Written evidence submitted by Act Now For Autism (CMH0205)
This submission is on behalf of Act Now for Autism. Act Now for Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK. Autism is a complex condition that it is estimated now affects 1 in 100 people. It is essential that parents who have children and young people with autism are confident that they can access effective mental health services for their children should they need to do so. From the many thousands of parents we are in contact with, the quality and the effectiveness of mental health services that is provided by CAMHS is something that parents feel anything but confident about accessing. Many parents have told us that accessing CAMHS actually made everything worse.
3.1 We were told by a parent who accessed the service when she has experiencing real issues with her child, that she was advised that her child might be more complainant if the next time the parent did something wrong the child were able to ground their parent. This was said in front of the child. The parent told us that the reverberations of that were felt in her home for many years. Young people with autism often perceive things very differently to other people and what can be a perfectly reasonable action carried out by a parent, can be perceived as anything but reasonable by a child with autism. Telling an autistic child to stop drawing on a wall will to that child be unreasonable.
3.2 Another parent told us “when my son was not attending school and not leaving the house during year 9 the CAMHS psychiatrist did a home visit. My son barricaded himself into his room. The psychiatrist proposed to return with "some men, and bundle him into a car".
3.3 “CHAMS never look behind the behaviour of a child with autism to see what it is occurring. They simply try to stop the behaviour’
3.4 “Once they diagnosed ADHD they stopped looking for the autism, which impacted on my child’s life just as much as the ADHD. We were discharged from the services and spent the next three years trying to find a way back in for them to assess for autism. Four years after the diagnosis of autism our son finally got a diagnosis of autism.”
3.5 “My local CAMHS team refused to accept a referral for my son, stating that autism did not come under their remit, despite autism being one of the nationally listed "who we see" criteria. I spent 18 months trying to get a referral with no success. I gave up.”
3.6 “Even though our son was diagnosed with Tourette Syndrome by CAMHS their leading psychiatrist continues to refer to by son as having a tic disorder. Tourette Syndrome and tic disorder are, two completely different things. Why do they not know that?”
3.7 “CAMHS appeared not to know that eating disorders and autism tend to go hand in hand, they see everything as a behavioural issue that needs to be resolved without looking into why the behaviour is presenting”
5.1 “They had a "triage" system where their first point of contact decided whether your case warranted an appointment with the psychologist. We were refused 3 times over the course of the next year”
6 Worryingly concerns regarding suicidal children raised with the service by parents whose children were self harming and making threats about ending their life, are often not taken seriously. To the point that even if a young person tried to carry out their threat and ended up in hospital, the service still decided that there was no urgent need to see the young person. Despite a promise given to one parent that her son would be seen by CAMHS after his discharge from hospital, a week later CAMHS informed the parent that their child was no longer a priority.
7 Parents feel that some of the therapies and interventions do not work for their children because they are not being differentiated in any way to meet the needs of their child or young person. For example CBT often needs to be differentiated for a child or young person before it is successful. That rarely happens for children who have autism making the outcome of that therapy very different for a child with autism.
7.1 Several parents told us that therapy and counselling sessions were stopped and the reason given by CAMHS was that their child was failing to engage in the expected way.
7.2 One parent told us ‘There is no expected way for a child with autism to engage. Every child on the autistic spectrum is different. I felt that no effort was made on the part of the therapist to engage with my child’
7.3 Another parent told us that to enable her daughter to feel comfortable and engage with adults, she had a series of questions she liked to ask them. Her mother said it did not matter what answers were given. The child simply sought to ask her questions. The child was told on her first visit to a CAMHS therapy session that questions were not allowed, and that was just the way they worked. Weeks later CAMHS cancelled the sessions saying that the child had failed to engage during the therapy sessions.
7.4 Another parent told us that her son loved art therapy. It really helped to keep him calm and allowed him to talk about the issues that were troubling. CAMHS decided that it was not the best form of therapy for him and offered music therapy instead. The child had sensory issues associated with noise and music and after one session refused to attend anymore sessions. His Mother told us that she had wondered if they had made the change deliberately knowing that he would not want to attend.
8 Parents are frustrated with the amount of time that it can take to receive a diagnosis of autism from CAMHS. Some parents have waited as long as 5 years for a diagnosis.
8.1 One parent told us “We have been trying to get our CAMHS to do a proper assessment for ASD for 5 years. It has been a long, very frustrating process with many delays and waiting lists. We finally got them to do the ADOS assessment last October yet we are still waiting for the results.”
9 For a great many parents the journey with CAMHS came to an end after receiving a diagnosis of autism. One parent told us “After they finally decided that our son did have autism, we were hoping for some support. Hoping they might tell us how we could support him. But no they handed us a piece of paper and closed the door in our face.”
9. 1 It can take many months for a confirmation of diagnosis letter to be sent to schools, outreach teams and GPs meaning that much needed support for the child is delayed. Even after a diagnosis is given it would appear that it can be removed at anytime by the service if the child has to see a different professional or team in the service.
10 It is not unusual in some areas to wait up to two years for a first appointment with CAMHS. The first appointment is often a triage appointment and that can mean that the child is turned down from seeing someone in the services who has an autism specific understanding.
10.1 Parents can spend weeks or months meeting with CAMHS only for them to decide that they do not actually need to see the child so no support for the child is given.
11 Parents are often left in the dark about the suitability of the professional who is seeing their child or young person. It would appear that asking if the professional/s that are seeing their child has an in depth understanding of autism is seen as being confrontational and vexatious.
12 Some parents are so desperate for support for their children that they will move to another area in their quest to access support for their child.
13 There is no transition between children’s and adult mental health services and often no adult mental health services to access post 16.
14 “CAMHS was a mixed bag for us. The wait from intake to beginning the diagnosis process was close to a year. And once we were given the diagnosis they told us that all they could offer were four follow-up meetings to help us understand the diagnosis and/or explain it to her. But the actual process itself was brilliant. For the first time I felt listened to. They were amazingly empathetic. And when she had a meltdown during the ADOS they deferred to me saying...you're the expert here Mum. What's more they called a couple of days later to say that after reviewing the video they felt they had enough information to make the diagnosis without putting her through any more stress.”
14.1 “Well I can honestly say CAMHS did loads for my severely autistic son on two occasions when there was a crisis at his school. I had a wonderful worker who supported me at meetings and battled in my son’s interests.”
Recommendations
15 It is imperative that children and young people with autism have a mental health service that they can access that is fit for purpose. At the moment we do not appear to have such a service on offer to children and young people with autism. All professionals who work within CAMHS need to be suitably and effectively trained to understand autism, as a matter of urgency. Autism specific training needs to be delivered right throughout the services. Parents not only have a right to ask and know, but should be told as a matter of routine, if the professional who is dealing with their child or young person, has received any autism specific training and what that consisted of. CAMHS have a responsibility to children with autism to understand their needs and to react accordingly to those needs. The CAMHS services need to be much less fixed and rigid and needs to differentiate its practice for children who are on the autistic spectrum. It is simply unacceptable to expect any child to engage with a service in a certain way, and this is even more so if the child in question has autism. Parents concerns for the safety of their children must be taken seriously and it is impossible to assess the risk of suicide or self harm without actually seeing the child or young person. Living with autism can be difficult enough, without being told by a professional who has yet to see your child that they are unlikely to attempt to take their own life of self harm. Statistics show that there is a much higher suicide rate in young people and adults with Asperger Syndrome. Parental concern regarding the wellbeing of their child must never be discounted. Waiting times also need to be addressed as a matter of urgency, as does writing letters confirming a diagnosis of autism being sent out to schools, outreach teams, and GPs. Many schools and outreach teams will only start to support a child with autism once their diagnosis has been given to them in writing. There needs to be an integrated pathway developed between childhood mental health services and adult mental health services. Children with autism do not cope well with change and the transition between services needs to be well thought out and auctioned.
4 April 2014