Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

Call for increase in Carer’s Allowance

UK Autism Foundation backs call for an increase in Carer’s Allowance

The UK Autism Foundation has backed the call for a substantial increase in the carer’s allowance.

There are six million carers in the United Kingdom who look after family members or friends at home and often struggle to pay for their basic needs. Carers are finding it difficult to apply for the allowance because of the restrictions -you have to be caring for more than 35 hours a week. You cannot study for 21 hours or more. If you are receiving a state pension, the two benefits cancel each other out.As a result of the restrictions fewer than 500,000 people get the carer’s allowance. The UK Autism Foundation has joined many UK charities, calling on Her Majesty’s Government to increase the allowance and to place less restrictions – in order for carers to receive financial support.

Ivan Corea of the UK Autism Foundation said: ‘There are families with autism who are plunging into poverty as a result of the current economic crisis. The welfare system needs reform but parents and carers of children and adults with autism and Asperger’s Syndrome need urgent help not in ten years time but in 2009. We are calling for urgent help for parents and carers where autism is concerned – the UK Autism Foundation has been campaigning for substantial increases in tax credits, the disability living allowance and the carer’s allowance.’

Over 200 MPs of all parties in the House of Commons have signed three early day motions backing the call of the UK Autism Foundation for more support for parents, carers, children and adults with autism and Asperger’s Syndrome including increasing the carer’s allowance.

There are over 500,000 people with autism in the UK. Many parents care for children and adults with autism and Asperger’s Syndrome.Many are struggling to pay bills as a result of the economic downturn. Some are in fuel poverty. The UK Autism Foundation has been lobbying Her Majesty’s Government to help parents and carers during these difficult times.

Source: UK Autism Foundation

Sports Day at More House School

We’ve just come home from Sports Day. This always used to be a day of tears, upset and general not wanting to go to school. That is, until they started at More House.

Although our eldest has always been a capable sportsman, last year we were all amazed when our youngest son won his race, largely down to the thoughtful way the PE staff had grouped the boys so that each boy had a real chance of winning. He had never won a race before, was not well coordinated, pretty dyspraxic and hated anything to do with sports, but this win, encouraged by the wonderful members of staff had spurred him on.

This year when Sports Day dawned, he was excited, a bit nervous and most of all, ready to win.

It’s amazing how the right encouragement and instilling self-belief can give a child a complete turnaround. Actually, it’s not amazing at all, it’s common sense, but it had never happened before for my son. When his PE teacher told him last year that he was really impressed with him in hockey, he held on to it all year as validation that someone (other than us, of course) believed that he could do well in sports.

During the year he has gradually gained confidence and competitive spirit. He has moved up the ability groups from bottom to top in a couple of terms and now believes that he is fast and able to win if he puts his mind to it. Now he wants to take part in sports and he wants to be picked for teams whereas before, he would do anything to avoid it.

Here is a short video of him and of his brother Luca, both winning their races. The mad woman shouting is me (who never won anything at sports and so am doubly proud)!

To cap it all, Giorgio won Most Improved Athlete of Year 5, something that I do not think he will ever forget. Tonight he is truly a happy child (for once!)

I wanted to write this post to thank the PE gods that are Messers Williams, Roddis, Faasen & of course Mr Williamson..(who could forget him?) for their dedication and enthusiasm to our boys. I’m not sure you realise how much we parents of  boys with challenges appreciate your efforts. Sports Day was inspirational and so are you.

Well said, Mr Bercow!

I’ve just read in full the House of Commons debate on the second reading of the Special Educational Needs and Disability (Support) bill last Friday. I must highlight one particular section of the bill, introduced by John Bercow MP:

John Bercow: “Hon. Members have referred to the phenomenon of children suffering from autism. We know that children on the autistic spectrum vary greatly, but they all tend to suffer from what is commonly known in the trade as the triad of impairments—lack of social imagination, social interaction and social communication. It is important that we train staff so that we do not continue to experience the problem whereby innocently enough, but very damagingly, professionals in the education sector mistake a disabled child for a disobedient child. When we talk about people on the autistic spectrum being more likely to be excluded from school, let us be clear: that is what is taking place in so many cases. The professionals do not understand that the child is not in any sense a conventionally badly behaved child.

The understanding even of autism, which is a relatively high-profile condition, is too limited. We have to try to stimulate awareness. I was with my young son in a park in central London only a week or two ago. My son has phobias about a number of things, as children often do, and perhaps autistic children do in particular. He is anxious about hand dryers. I have always explained that they cannot do him any harm and are not dangerous, but he hates the sound that they make. When we went to take him to the loo, I said to the park-keeper, who quite properly, has to turn the key and open the loo, “Would it be okay if my son went into the disabled loo?” because I happened to know that it had no hand dryer whereas in the ordinary loo there was one. She looked completely uncomprehendingly at me and at him—I make no personal gibe at her; I am simply making a wider point—and I repeated the question. She said, “But he’s not disabled.” Again, I put it to colleagues that there is an issue of understanding. People often think that to be disabled, someone has to sit in a wheelchair, lack a limb or have a demonstrable and immediately apparent impairment, such as blindness, but children with problems on the autistic spectrum or with speech, language and communication impairments—there is often a close link between the two—can, in some cases, be disabled.”

From one parent of an ASD child to another, well said, Mr Bercow!

Read the whole debate here: Read the minutes from the second reading here

Source: Hansard,

Update on Special Educational Needs and Disability (Support) Bill

Source: Epolitix: Conservative MP John Bercow makes the case for his Special Educational Needs and Disability (Support) Bill, which has its second reading in the Commons.

Through my work conducting a review into children’s speech, language and communication services for the government, I already knew that children with special educational needs (SEN) were frequently being let down.

But the degree to which this vulnerable group of children are being failed by the school system was brought into stark reality when I saw the government’s scandalous exclusion figures. Children with SEN are nine times more likely to be excluded than any other children. So when I was drawn out of the private members’ ballot back in December it was a compelling opportunity to try to do something about the devastating lack of support that is leaving this vulnerable group of children unable to reach their full potential.

Far too few education professionals and schools have the appropriate skills, expertise and training to give the one in five children with an SEN the right support. There is no mandatory training for teachers in SEN issues, and despite their crucial role only new special educational needs co-ordinators (SENCOs) will be expected to demonstrate their SEN knowledge from September this year.

This step forward is due to campaigning by the National Autistic Society (NAS) and others, but, even so, many SENCOs will not be covered by the requirement. My SEN Bill is drafted by the NAS and backed by the Special Educational Consortium. It has its second reading in Parliament on Friday May 15 and it aims to improve training for teaching staff, introduce a new requirement that inspections should consider how well schools meet the needs of pupils with SEN and disabilities such as autism and reduce inappropriate exclusions of children with SEN.

The profound difficulties which children with SEN experience at school frequently go unheard and unrecognised, because their support is not reviewed and Ofsted inspections often ignore whether schools are meeting their responsibilities towards them. This is simply unacceptable, and schools and education authorities must be made accountable for the support that they provide. As a result of pressure from the Bill, children’s secretary Ed Balls has already committed to look at how Ofsted inspections can have a greater focus on SEN, so my Bill aims to ensure this becomes a reality.

I urge as many of my colleagues as possible to join me in Parliament on Friday to ensure vulnerable children get the support they need to reach their full potential, because when the right help is in place at the right time, children with SEN can and do flourish in school.

Source: Epolitix

Read the minutes from the second reading here

See also: Well said, Br Bercow!

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Government Supports Autism Bill (UK)

The Government has, for the first time, declared its support for what could be England’s first Autism Bill. The National Autistic Society (NAS) celebrated the move as a vital development for people with autism as Care Services Minister Phil Hope committed to enshrining in law a raft of new measures, via the Autism Bill, which could drive a dramatic improvement in local authority and NHS services for people with the condition

On 13th May, MPs voted yes to the Government’s proposed blueprint and time scales to improve support and in a major development the Care Services Minister gave the forthcoming national adult autism strategy extra force by adding it to the Autism Bill. The Bill now awaits its third reading, scheduled for 19th June, and with the support of the Government is likely to pass to the House of Lords.

Mark Lever, chief executive of the NAS said; “We are absolutely delighted that the Government is prepared to take decisive action to tackle the shocking lack of help which leaves people affected by autism feeling isolated, ignored and often at breaking point. The Autism Bill has passed a major and crucial hurdle on the road to becoming law but there’s still some way to go. Autism is a serious, lifelong and disabling condition, and without the right support it can have a profound and sometimes devastating effect on individuals and families, so we will keep working with the Government to ensure the Autism Bill can deliver where it is really needed.”

The Autism Bill is being championed through Parliament as a Private Member’s Bill led by Conservative MP Cheryl Gillan and was drafted by the NAS on behalf of a coalition of 15 other autism charities. She said; “I commend the Government on their commitment to transforming the lives of children and adults with autism via the support of Schools and Learners Minister, Sarah McCarthy-Fry and Care Services Minister, Phil Hope. Today is a real turning point for the thousands of people affected by autism who have been unable to get the help they desperately need and I look forward to working with the Government to make this vitally important Bill a reality.”

The Government’s measures come as our I Exist campaign found that at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help. Under the Autism Bill, the national adult autism strategy, due at the end of this year, will hold local authorities and NHS services legally responsible for providing support for adults with the condition and ensure they have clear routes to diagnosis, assessment and support. The NAS is urging as many people affected by autism as possible to take part in the consultation for the strategy which closes on the 15th September.

This boost for adults with autism builds on a previous commitment by Sarah McCarthy-Fry MP to fulfil the Autism Bill’s original demands for better support for children via new regulations for Children and Young Peoples Plans. In an important win for the wider disabled community, these would legally require local authorities to collate and share data and information on children with disabilities with other agencies, which could see a huge sea change in disabled children’s services and ensure they get the support they need to fulfil their potential in adulthood.

Source: National Autistic Society

Read more on this subject

Parents rate local authority Disabilities service at 59%

When I was at school, a score of 59% definitely meant ‘could do better’, if not ‘should do better’. But that’s the score received by 10 local authorities in England for their disability services.

The survey, completed by the British Market Research Bureau on behalf of the government was intended to measure parental experience of services for disabled children. The survey and indicator have been developed as part of the Aiming High for Disabled Children programme.

It is the first ever national survey of parents’ views of services for disabled children. Parents completed a questionnaire asking for their views of health, social care and education services for their disabled child as experienced in the past year.

Srabani Sen, Chief Executive of Contact a Family said, “The views of parents should drive local authorities and primary care trusts to ensure that the right services are available to meet the needs of disabled children and their families. This new data is vital in emphasising the key part that parents and families have to play in improving services for disabled children. We know that these services work best when parents are involved in their design and delivery, and I hope that local areas will be able to use the results to continue the good work that many of them are already doing to engage with parents and develop services together.”

The fact that they are measuring this to determine a baseline for future improvements is great, but 59%? Just over half? That’s a lot of people who are dissatisfied with the care and education their disabled children are receiving.  It is clear that this kind of rating of services is long overdue and that many local authorities need to try harder to provide a satisfactory service to vulnerable children who need the greatest help.

Autism Assistance Dogs

Leo, our own Autism Companion.

Leo, our own Autism Companion.

As you may know, we recently got a puppy because we had read that dogs are good for children on the autistic spectrum.

Leo is still a puppy and has just started training with the scariest dog handler ever, but already he has bonded with our eldest son. Despite instructions from the trainer to ‘ignore the dog’, our eldest always has to say good morning and good night to the pup and to be quite honest, this makes him so happy I am disregarding the trainer (at the risk of being told off and made to lie down submissively at his feet..).

Our eldest takes him for a walk sometimes before school, always after it, and has already taught him to sit. Because he is very sensorily sensitive and volatile, I had imagined having a dog would provide comfort for him when his is angry with the rest of the family or feels unfairly treated (which is quite often, to his mind). To my great joy, this seems to be the case already. The dog has given him something to care about that isn’t himself and this is quite amazing.

However, training is a long process and having a dog is a large and long-lasting undertaking, however beneficial it might be for the children. I have just found a site that offers Autism Assistance Dogs that might be worth considering if you have autistic children between 3 & 10 and are thinking of having a dog.

The site, at http://www.support-dogs.org.uk/AADogs.htm says, “Our Autism Assistance Dog programme is designed to improve the quality of life of families with autistic children. It is based on the principle of providing a fully trained dog to the parents and the autistic child along with the correct training and support to ensure that the dog works to the maximum of its abilities.”

This kind of dog would not be not be necessary for our family, for example, as our boys are high-functioning, although our youngest has a nasty habit of walking out in front of cars. But I can see how useful one could be for more severely affected children. Disability Support dogs aren’t just for autistic children, but for those with other disabilities, especially epilepsy.

Take a look at their site – it’s a cause well worth supporting. Donate if you can.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

My hero – Geoff Adams-Spink

This is an item about a hero of mine, Geoff Adams-Spink. Geoff is a BBC correspondent whom I met when we were both training to be journalists on a Post-Grad course in Falmouth. He has worked extensively across the BBC and has never let his disability prevent him from achieving his goals.

Of course, he’d never have got as far as he has if he wasn’t jolly clever, a world-class wit and superlative speaker as well but he is also an example to my boys that whatever difficulties you may have, they are surmountable with a shed load of grit and determination.

My boys have different disabilities to Geoff, but it is my hope that they will never let their own challenges stop them following their dreams.

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



Celebrate Calm – well worth signing up for.

I am taking the liberty of quoting from an email newsletter I subscribe to ‘Celebrate Calm, written by Kirk Martin. It is about his son who, like many of our children, marches to the beat of his own drum:

“The following message is very personal and my wife never likes me sharing it, but it seems to strike a chord with people and provide helpful perspective. I wrote this about Casey several years ago–for those who have met him at the workshops, you know that Casey is no longer a little boy (except at heart)!

I look at other people’s kids who are compliant, excel in school and are sailing through childhood. And I really like those kids, I do. At one point, I wanted a child like that and wished I had an easy kid at home. But now? I wrote the following one night after peeking in at my son sleeping. I encourage you to do the same. I hope you will discover some common feelings toward your child.

The Beat of a Different Drummer
I peek in at him late at night lying in bed, fast asleep, my no-longer-little guy sprawled out across his bed, long unruly mess of hair covering his face. . .and I smile. I smile because he is full of personality. He is so different than me in many ways, different than my expectations, different than the little boy I had always imagined. And for that I am grateful. He’s his own person, knows what he likes and doesn’t like. I look in at him, peaceful and innocent while he sleeps. The fight is gone and his little mind is resting. He’s gone full force for the last sixteen hours, he needs a break.

I like it that he pushes the limits, like it that he questions everything, because one day he’s going to do something spectacular. Along the way, he’s going to make some big mistakes, but he’s going to live large and dream large. Underneath the spunk and mouth is a heart not only lined with gold, but filled with it. It is large and feeling, and it wants to do good even when his impulses lead him astray at times.

I think God must look down and confuse him with a little tornado. But I also think God looks down and likes what He has created, likes the little tornado who is growing into a man.

I think He sees Himself in my little boy, funny as that sounds. The part of God who is the Creator, who by the sheer force of His energy and being created life and all that is in the world. The part of God who was willing to step into humanity and persevere on a rugged cross because it would help people. The part of God who walked among men, largely misunderstood, often reviled because He was different and didn’t do things the way the rulers of His era thought they should be done.

But He kept going. Because He, too, had a mission. He didn’t care what others thought. His vision was larger than a mere thirty-three years on earth.

I think God must see Himself in the part that sometimes misses out on earthly things because he’s in tune with something deep inside another person. The part who remains an idealist even when the world around him is less than ideal. The part that isn’t afraid to look into eternity and see better things in all of us.

That is my son sleeping there. We fought each other until we couldn’t fight anymore. Until I realized that I was the one who needed to change, because I wasn’t going to change his nature. Perhaps he has been given to me so that I would change.

That is my son. Sometimes he inspires anger, sometimes frustration. Then he makes me laugh, even smile in resignation. And as I look at him, he makes me cry. He is a wonderful creation. Through all the struggles, I can see the imprints of the Creator.

He is my son. He marches to the beat of a different drummer. Thank God.”

I hope he won’t mind me republishing this but these emails have always been very helpful to me and are well worth signing up for. He also has a range of self-help CDs, and is US based. Find him here: http://www.celebratecalm.com/