NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

Mindfull: A new online mental health service for teens

Tania writes…

A new online service for adolescents with mental health problems is being launched today (Friday 5th July 2013).

mindfull logoThe service at mindfull.org is aimed at young people aged 11 to 17. It’s offering advice, support and the chance to talk online and confidentially with counsellors.

The young person can choose the type of support they receive and, because MindFull is online, it is available anywhere at anytime whether it’s counselling, self-help or mentoring from another young person who has been in a similar position and is now able to help others.

Young people can suffer a huge range issues that stem from depression and  anxiety such as self-harm, anorexia, bulimia, substance abuse and even suicide attempts. The root cause may not be clear to see but there will be a root cause (physical and/or emotional) that needs to be addressed as much as its effects.

MindFull is here to help you get better; and we’ll also give you tools and tips to help you get through those tough times that may arise in the future. We know that asking for help is not always easy, but MindFull is a safe and trustworthy space where you can choose the right support for you.

However you feel, remember that you’re never alone: when you’re ready to talk, were ready to listen. MindFull is open every day, between 10am and midnight.

Launch video


Young people often find it difficult to start conversations about their mental health problems, fearing they won’t be taken seriously or be told just to “get over it” or “pull themselves together”.

Then, when they do pluck up the courage to open up about their feelings, a concerned parent may take them to the GP who may refer to CAMHS, the Child and Adolescent Mental Health Service. As many of us know, the quality of CAMHS can be variable and a bad experience can make matters worse.

Helping as a parent can be  easier said than done

At present we are involved with CAMHS and have, this time round, been pleasantly surprised although this hasn’t been the case in the past and I know many of you have had bad experiences

Child mental health is a growing issue and any service that can help is to be welcomed. As a parent, it is of course, always best to foster an environment at home where your children can feel comfortable tackling difficult subjects with you. Sometimes it’s best just to keep your own mouth shut and not feel you have to solve your child’s problems right off the bat – non-judgemental listening is what is needed.

Oh, but that is SO easy to say, isn’t it? Even as I typed that, I was thinking that I needed to learn how to do that – I know what’s needed, but I just want so badly to ‘fix’ all my children’s problems that I go about things in the wrong way and then berate myself later.

I am what’s known as ‘A Rescuer’, ready to leap in and save any situation from disaster. I hate to see others’ suffering and pain because I feel it myself. I bet I’m not alone in this. And although sometimes it works out, with your children, they may not tell you in the first place and when they do, they need support but not fixing. They have to find their own way and although parents can be a vital source of strength, they will almost always need impartial help as well or instead.

If you care for a young person/people either as parent /carer or in a professional capacity, take a look at this service and pass it on. It’s a tough old world out there and our youngsters need all the help they can get.

You can find Mindfull on social media at the following locations:

BBC Radio 4’s Today programme had two interesting features about this this morning. You’ll be able to listen again later today at this link.

Read other SNJ posts about child mental health:

What has your experience been like? Do you think a service like this is a good idea?  Add your comments and opinions below!

Carer’s Week: My son is a young carer

logoIt’s Carer’s Week, organised and supported by quite a few charities in the UK

Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination.

Caring Facts

  • There are over 6.5 million carers in the UK.
  • Every day 6,000 people take on new caring responsibilities.
  • Every year two million people take on new caring responsibilities.
  • Most carers (5.7 million) are aged over 18 and the peak age for caring is 50 to 59.
  • 1.5 million carers are aged over the age of 60.
  • There are 175,000 young people under the age of 18 who provide care, 13,000 of these provide care for 50 hours or more per week.
  • One in eight workers in the UK combine work with caring responsibilities for a disabled, ill or frail relative or friend.
  • If you are not a pensioner, or in full time education, you may qualify for £59 a week government allowance, but only if you earn less than £100 a week net.

To mark Carer’s Week, SNJ’s pal Angela Kelly, who is Tania’s co-chair at Family Voice Surrey Parent-Carer Forum, has written this moving piece for us about her own son who is a young carer…

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Young Carers – Angela, Edward & Monty

Young carers are children and young people who look after  or help to look after someone in their family who has an illness, a disability, or is affected by mental ill-health or substance misuse.

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. The tasks undertaken can vary according to the nature of the illness or disability, the level and frequency of need for care and the structure of the family as a whole.

angelaboysThe above is a definition of the tasks a young carer undertakes in their daily lives, and it outlines it quite well.  What the statement cannot tell you though, are the sacrifices a young carer makes, which in many cases amounts to the loss of their childhood.  The social, emotional and wellbeing sacrifices are immense, but often not realised or noticed by the young carer.

However, in my experience  it would be difficult to find a young carer who would see their role in the same way.  Many of the ones I know would shrug their shoulders and tell you it’s “just life”, what they do, what they are used to, how they have been brought up. I have every admiration for them.

My older son, Edward, is classified as a young carer  to his younger brother, even though he has his own difficulties. Although he has my support (many young carers may not have this if they are caring for their parent or parents) there have also been many occasions when he has had take to take on the role of caring for his brother.

He has had his brother, Monty, sleeping in his bed on many occasions to enable me to get some sleep after perhaps two or three nights of tending to his very active brother. He has then had to attend school the following day.

He has tried to help his brother learn positive ways to behave and has helped to feed him when I, after an hour of coaxing, had given up, thoroughly exhausted and despairing at what life had become.

angela2He has missed out on all sorts of trips because I have been unable to take his brother along because his behaviour is too disruptive (there were never many willing babysitters!). He has not been able to join the local cricket club.  However the most heartbreaking is that he has been the object of severe bullying at school because his brother is ‘a retard’. He is, in fact, autistic with seizures and learning difficulties.

School never acknowledged the bullying and merely punished my own son’s retaliation to the bullies. I felt totally helpless.  He has also had to tolerate my guilt and anxiety at not being able to do many of the things with him that I wanted, and he needed me, to.  Instead we snatch the odd outing together and have lunch together now and then. Not really the mum and son things I envisaged when I dreamed of what having children would be like.

Despite all of this, the love they have for each other is amazing to see. They fight and fall out; which siblings don’t!  I do know that Edward would do anything for his brother (except watch CBeebies – there is a limit!).  His passion for fishing that he learned from his older siblings (who have moved out and are living independently) has caught  on and he has now hooked Monty into the sport, tiny steps so far but one day it might be a shared interest they could do together, so I am hopeful.

I asked Edward just now if he thought he was a young carer and he responded, “Nah, not really, it,s just what I do.”

Says it all really!

Angela wrote about a Day With Monty a while ago on SNJ. Read it here

A personal take on depression: Would you recognise it in your child?

Tania writes

It’s Depression Awareness Week, although with the state of the economy and the weather, it wouldn’t surprise me if most of the country was painfully aware of feeling a bit in the dumps.

Ah, see what I did there? Of course, there’s a difference to being a bit blue and being clinically depressed, and for parents of young adults, teenagers and even younger children, it is very important to know the difference.

For example, what is the difference between your child just having a bad day, or your teen often being irritable or secretive because that’s all part of hormones and growing up, and the onset of something more intractable that will require careful attention and treatment?

Granddad

Granddad

I was diagnosed with clinical depression at the age of 16, although I had always been an anxious child due to an often uncertain home-life. For me, I can trace the true onset of major depression back to the death of my beloved grandfather, who suffered an unexpected and fatal heart attack in front of me when I was just 12.

The adults were allowed to grieve; I was told to ‘put it behind me’, although how I was expected to have the skills to get over the shocking death of the only male constant in my life is beyond me. My, now late, mother, many years later, told me that, in retrospect, she regretted the way she had handled it, but in fairness, it was 1980, and things were different then.

That evening, I had to call the ambulance for my gran and explain what had happened. I was staying with them over February half-term, while my sister was at our Dad’s house.

The trauma of it still revisits me though, even now after adult therapy. It’s still raw, 33 years later. It makes you less able to cope with adversity in a healthy way. The detail is still etched on my mind. It changed me, irrevocably.

Today, I’m great in a crisis, but I pay for it afterwards – a delayed reaction. I’m ever-vigilant, the fight or flight response never far from the surface. It’s not an easy way to live.

Some Shocking Statistics*

  • 1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class.
  • Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm  and around 25,000 are admitted to hospital every year due to the severity of their injuries.
  • More than half of all adults with mental health problems were diagnosed in childhood. Less than half were treated appropriately at the time.

Depression can often be part of illness

Anxiety and depression are also features of Ehlers Danlos Syndrome, with which both Son2 and I have now been diagnosed, so I was predisposed, in any case.

Son2 hasn’t had any trauma, but with EDS and Asperger’s it was almost a dead-on cert that he would be affected. He has acute anxiety problems, but because of my experiences, I knew what to look for and he is receiving treatment. It won’t ‘fix’ him, but it may help give him coping skills.

Son1, who also has ASD, has anxiety issues too. On the face of it, he looks like he’s coping well with help from his specialist school, but I know it’s still there, waiting to trip him up and so parental vigilance is needed.

Luckily for both of them, their father is the ultimate laid-back Dad (or in their speak, “soft as a pillow”), so they have a great male role model and a close-knit family. Even that, I know, is not always enough.

This is the first time I’ve ever written about my own depression and it isn’t easy. I’ve been embarrassed, not wanting to show weakness. I can barely utter the words ‘mental illness’ in relation to myself. But just recently, since I’ve been ill, I’ve had to do a lot of reassessing. I expect I have felt the same way teenagers feel when they don’t want to admit they are depressed or that there is anything bothering them at all.

Just because your child or young person hasn’t suffered a huge trauma such as family break-up or bereavement does not mean they are not at risk of mental illness. Lack of confidence, being bullied, poor body image, difficulties at school can all be factors.

And that’s not even taking into account any special needs they may have such as Asperger’s, dyslexia or other learning problems that can affect self-esteem. Or they may just be genetically predisposed to it, especially if you or their other parent are affected.

young minds logoAs a parent, you need to know what you’re looking for and Young Minds, the mental health charity for young people, have lots of resources on their site for parents and for young people themselves. Take a look, even if you don’t think your child has a problem. Parents are often the last to know so knowledge is power. There is also a section for teachers on recognising and helping young people with mental health problems.

The usual NHS route for young people with mental health problems is via your GP and then to CAMHS, the Child and Adolescent Mental Health Service, but as you can see from the comments in this post that is a very variable service, depending on where you live. I really would advise checking out the Young Minds site as well.

I shared just some of my story to help raise awareness that depression can happen to anyone, at any age. But when it happens to a young person, without a vigilant adult, their problems can spiral out of control catastrophically. Self-harm is becoming more common, anorexia and other eating disorders are almost certain to include depression and far too many families are torn apart by the loss of a young person to suicide.

Teenagers are notoriously poor communicators; they are working on growing up and away, if they are able. Be watchful, be informed, keep talking. If you can’t do this without arguments, try this book, the 1-2-3 Magic for surviving your teenagers. It will show you how to begin to see them as young adults in their own right, and no longer just your little ones.

If you’d like to share your experiences, resources, tips or knowledge I’d love to hear them!

* Source: Young Minds

Autism Acceptance? It’s so much more than that…

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels of need and what one may manage, the other may not.

superbabeOne thing we have learned – just when you think you’re doing okay, something comes along to trip you up and you have to take stock and look for new solutions. You are constantly operating at your maximum tolerance, so that when something comes along that you didn’t expect, it is easy to experience meltdown or even breakdown.

People on the outside often do not understand this and may judge you accordingly. This says more about them than you.

While working for better understanding, treatment and life chances for people with autism or any other condition is a necessary and constant crusade, for those families affected, it is much more personal. It can often be just as big a battle for self-acceptance and coming to terms with a diagnosis and that this is the way life now is.

For me, recent health issues have meant I have had to accept I am not superwoman and reassess my goals. After five years of not claiming school transport, I have now had to admit my limits and ask for a taxi for them. It’s a compromise; I won’t ask for both ways because  they need the security of knowing if they’ve had a bad day, it’s over as soon as they’re in the car with me.

Universal Truths

But whatever your personal circumstances, I believe there are universal truths, and not, for that matter, just for parents of children with autism, but for any parent of a child with a disability, medical condition or rare disease (named or not), so you can just substitute the word ‘autism’ for any of those.

We’ve been doing this a while now, so I feel pretty qualified to offer the following, based on my own experiences:

1. If you have never cared for a child with autism, you don’t know what it is like. Even if the parent seems fine and happy, you should never make assumptions of what it’s like being in their shoes.

2. It’s different for every family affected. For example, if you have a child with high functioning Asperger’s, it is likely to be a very different experience to life as the parent of a non-verbal, severely autistic child. This is even more true if your child has medical needs as well.

3. It’s hard work – mentally and physically, wherever they are on the spectrum. Some people cope with certain aspects better than others. Sometimes you will feel like you’ve been run over by a steamroller but you will eventually peel yourself off the floor like a flattened cartoon character, because you have to.

4. Stress and worry are likely to be your constant companions; maybe even depression. What do you expect? You’re only human. It’s okay to admit it and to seek help for yourself. In fact, it’s preferable than pretending everything is fine.

5. You will be judged. There will always be people who think they can parent your child better than you can. You will learn not to care.

6. You are likely to end up with more friends who have children with special needs than those who don’t.

7. You will feel like running away. Or worse. You almost certainly won’t end up doing either.

8. You will learn to smile when people tell you they don’t know how you cope, or that you do fantastically well. Inside you may well think, “If you only knew…” You may actually want to punch them, but it’s probably better to resist.

9. You will grieve at some level for the life as a parent you had envisaged before you actually were a parent. Then you will get over it and get on it with. After all, what’s the alternative? But at odd times, this grief will revisit you. This is normal.

10. You will read studies that tell you autism is caused by any number of things, most of which you will feel, at some point, are your fault. None of them are. Autism probably has lots of different triggers which result in similar symptoms. Read the studies, or don’t, they won’t change your reality.

All that matters is that you try to be the best you that you can on any given day. Some days will be good, some days (sometimes whole weeks) are better forgotten. Others can accept that or not; they can choose to be your friend and love you without judgement or not. You have no control over that.

Accepting yourself for being flawed and imperfect can be much harder than accepting your child’s diagnosis.

It’s what makes us human.

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

Ten tips when your child is newly diagnosed with a special need or disability

TanGio-phone_edited-1

He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

(more…)

Teenagers and suicide- a growing challenge for our times

Mental health in adolescents with or without special needs is a growing concern and a particular interest of mine.

I found an article on MedPage Today about a survey of teens who had been treated for suicidal thoughts and mental health problems that indicates they are still at risk of attempting suicide. This, to me, says that  just because you have sought help for your young person in this situation, you can never afford to think the problem has gone away.

sad boyParenting teens is, in so many ways, much more difficult than parenting younger children. A balance must be found between watchfulness and intrusion. They naturally do not want to share their inner thoughts with their parents and keep so much more to themselves. They often think that they should be able to sort out emotional problems for themselves, when they are in no position to do so alone. (more…)

The Brain Injury Hub – a brilliant resource

As part of Family Voice Surrey, I have visited The Children’s Trust in Tadworth a number of times as they kindly lend us a room for our meetings.

The Children’s Trust is a national charity working with children with acquired brain injury, multiple disabilities and complex health needs. They have a 24 acre site in Surrey, but offer their services to children from across the UK. Their staff are dedicated experts in rehabilitation and support work.

An acquired brain injury may be very obvious to see when it is profound and accompanied by physical difficulties, or it may be an ‘invisible disability’ that may have stemmed from a long-ago trauma or illness, that is not diagnosed for years, leaving a child with no support. The Children’s Trust helps those who need intensive levels of care but they realise that they have considerable expertise they can share at a wider level and so have developed a new online resource to do just that. Here, Ian Ray of The Children’s Trust explains all about it:

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copyright The Children's Trust

Courtesy The Children’s Trust

The suddenness of acquired brain injury can mean a child’s family life, their schooling and their relationships with their friends can be utterly changed overnight. One parent told me it was a little like shaking a snowglobe but having no idea when the flakes will begin to settle down.

It was the shock associated with acquired brain injury that we wanted to address with our new resource www.braininjuryhub.co.uk

Parents told us that in those early days in hospital, they didn’t necessarily want to know about all the complexities that may arise over the coming years – they simply needed to get by on a day-by-day basis.  Later on in the recovery process, it seemed that parents wanted to know more as their own insight deepened, and so we developed the Brain Injury Hub as an attempt to mirror the ‘journey’ parents told us about.

Visitors to the site are first asked who they are, and are then taken to a page that asks them where they are in this journey. Are they in hospital? Perhaps their child is back in education, or making their first steps into the world of work. Our hope is that we’ve presented our information in a way that gives parents and carers the information they need within just a few clicks.

The feedback we’ve had following our launch in May has been fantastic, but for all our efforts to create a resource of clinically-evidenced information, it is the real-life stories that our readers gravitate towards.  After all, it is the parents who have actually experienced caring for a child with an acquired brain injury who are the genuine experts. We’ve already seen some incredible stories shared.

On a personal level, I’ve been astounded by the capacity of these parents to cope with these enormous changes to their lives with optimism, humour and dignity. I hope over time we will see more of them sharing their stories on our site. Do get in touch at hub@thechildrenstrust.org.uk if you’d like to share yours. Other families have offered mutual support on our forums, and it has been immensely rewarding for us to see parents taking care of each other and offering advice in this way. http://www.braininjuryhub.co.uk/forum/

copyright The Children's Trust

Courtesy The Children’s Trust

We’ve also included some information for teachers on the site, in the hope that this will help what can sometimes be a difficult transition back to school. This part of the site has exceeded our expectations, with thousands of teachers already logging on to find out more about acquired brain injury.  Some have signed up for our quarterly newsletter, which has been very encouraging.

Building a resource around such a complicated condition has been incredibly challenging at times, but the project has been very well supported by the clinical staff who’ve shared their knowledge, and the parents who’ve given their time to make it as good as it can be.  We’ve had visitors from all over the world, perhaps pointing to the fact that families face some of the same difficulties, whether they’re in Portland, Oregon or Port Talbot.

So do have a look at the site when you have a moment. It’s by no means finished, and we’d like to see the site continue to develop in response to what our visitors want to see.  Over the coming months, we’ll be adding some video content to the site, and some improvements to our community space.

If there’s anything you’d like to see on the site, then do drop us a line at: hub@thechildrenstrust.org.uk

 

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

Tourette’s Syndrome – the facts and resources

A condition that is often misunderstood and that is sometimes seen alongside ASD or ADHD is Tourette’s Syndrome. Often inaccurately characterised as sudden, unexpected outbursts of swearing, which is easy to be the butt of comedian’s jokes, Tourette’s is, in fact, a neurological disorder that can affect different people to different extents.

I was interested to learn more about it and I thought you might be too, so I asked Michelle Kelly, Groups Support Officer for Tourette’s Action to write an article for Special Needs Jungle to explain exactly what Tourette’s is and how it’s treated.

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Tourettes Action – Who we are

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families.

We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

Lots of people have heard about Tourette Syndrome (TS) but there are still lots of misconceptions about the condition even though we are becoming increasingly more aware of it. Tourette Syndrome is an inherited neurological condition and although relatively rare, TS affects around one in every hundred school children and a total of around 300,000 adults and children in the UK. The condition is characterised by tics which are involuntary and uncontrollable sounds and movement. A common misconception is that people with TS tend to swear uncontrollably but in fact 90% of people with TS do not and their tics are manifested in other ways, whether verbal or otherwise.

The key feature of TS is that tics are uncontrollable and whilst they can be managed or supressed for a short amount of time they will eventually surface. Symptoms tend to present themselves at around about the age of seven and seem to peak at the onset of adolescence, between the ages of ten and twelve. Tics might start around the head and face and might involve blinking, for instance, or touching and jumping. Vocal tics tend to appear a little later on at around the age of eleven and might involve spoken words or sounds, but can also include coughing and sniffing.

There is huge variation in the nature of tics and the extent to which people with TS will experience them. Tics can change frequently and as one tic seems to disappear another may begin. The severity of the tics can change too and an individual may experience them to a differing degree throughout their lives. It is also thought that the tics can be made worse by stressful events and anxiety. If you would like more information about the causes of tics you can click on the link to our leaflet called what makes us tic?.

The good news is that for many children, the symptoms of TS disappear on reaching adulthood but for approximately half of people with TS, the symptoms will persist. Although the condition is chronic and long-lasting, it can be managed and does not have to impair an individual’s ability to live life to the fullest. Some have suggested that doing something as simple as concentrating on an absorbing task has helped to ease their symptoms a little, or even completely. What can make matters more complex, however, is that TS is also linked to other behaviours and co-morbidities such as Obsessive Compulsive Disorder, Attention Deficit Disorder and Autism Spectrum Disorders.

Managing Tourette Syndrome

Many people who have received a diagnosis of TS will not require medication to manage the condition and will not be significantly affected by their symptoms. There are medications that can help, although as is the case with any medication there are also possible side effects which must be taken into consideration. These medications can have success for some people, however, and so it is important to assess the impact on an individual basis. If you want to learn a little more about the kinds of medications that exist you can click on the link to our medications page where you will find lots of helpful information.

Psychotherapy can also help because it can provide practical ways for people with TS and their families to learn to cope with the symptoms of the condition and its impact on daily life. There are behavioural therapies that exist that can help an individual with TS to manage their tics so that they can become more socially acceptable, or in the event that they are causing pain, become less painful. You can find out more about behavioural therapies by visiting our behavioural therapies page.

There are plenty of relaxation techniques that can help to alleviate some of the stress that may be causing the tics or caused by them. The benefit each form of therapy will have will depend largely upon the individual and their own personal preferences but you can find plenty of useful information on our website or by visiting our forum to see what others have to say about their experiences of TS.

Get in touch to find out more

If you are a parent or carer of a child that you think might have TS and you would like to know who to get in touch with, we can provide you with a list of consultants in the UK. If you would like to know what support groups exist in your area then we would be happy to put you in touch. If you would like to contact Tourettes Action please click to visit our contacts page. You will also find plenty of information about events that are happening around the country and details about how you can get involved.

Useful Resources for Schools

Please find links below to our Key Facts for Teachers leaflet and a link to downloadable presentations on Tourette Syndrome that can be used in schools for teacher training and peer awareness.

http://www.tourettes-action.org.uk/storage/Tourettes%20Action%20-%20Key%20Facts%20for%20Teachers.pdf

http://www.tourettes-action.org.uk/ts-presentations

If ‘child centred’ help is a no-brainer, why isn’t it happening?

One thing that’s become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.

Our family has been waiting for a CAMHS appointment since the beginning of the year. I’ve called up the consultant’s secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It’s frustrating, stressful and my son meanwhile, is not getting the help he needs.

Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn’t work because he had Asperger’s and as he was now in the right school, goodbye to you!

And professional support for parents? Don’t get me started. My GP told me candidly that there wasn’t help for anyone and that’s just the way it is.

One lady who wrote to me recently said, “The two consultants in our CAMHS team told me that my son doesn’t tick enough boxes to fit easily into a diagnosis but they did acknowledge that he’s a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn’t have another chance of an appointment with her. This was in January and then I never heard from them again.”

She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. “It seems that at every step of the way we are faced with obstacles. I can’t believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different.”

Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.

She said, “During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn’t appeal because I was so wrapped up with dealing with her pain and needs myself.

“She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.

“After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement.”

After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.

Still, it’s not over yet the mum says, “I just hope we do get a statement so fingers crossed, and in the meantime I’ll learn all about tribunals just in case we don’t!”

Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We’re still waiting for the government’s document, “The Way Forward” to be published, despite it being ‘imminent’ since February.

The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?