Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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Autism diagnoses are more common in an IT-rich region.

A new study from Cambridge University has for the first time found that autism diagnoses are more common in an IT-rich region.

The Medical Research Council (MRC) funded study, published today in the Journal of Autism and Developmental Disorders, has important implications for service provision in different regions and for the ‘hyper-systemizing’ theory of autism.

Professor Simon Baron-Cohen, Director of the Autism Research Centre (ARC) at the University of Cambridge, led the study (which was conducted in the Netherlands) with Dr Rosa Hoekstra, a Dutch autism researcher based at ARC and The Open University. The researchers predicted that autism spectrum conditions (ASC) would be more common in populations enriched for ‘systemizing’, which is the drive to analyse how systems work, and to predict, control and build systems. These skills are required in disciplines such as engineering, physics, computing and mathematics.

The team had previously discovered evidence for a familial association between a talent for systemizing and autism in that fathers and grandfathers of children with ASC are over-represented in the field of engineering. The team had also previously found that mathematicians more often have a sibling with ASC, and students in the natural and technological sciences, including mathematics, show a higher number of autistic traits.

The researchers tested for differences in the prevalence of ASC in school-aged children in three geographical regions in the Netherlands: Eindhoven, Haarlem, and Utrecht-city. The region Eindhoven was selected because it is rich in IT having the Eindhoven University of Technology there, as well as the High Tech Campus Eindhoven, where IT and technology companies such as Philips, ASML, IBM and ATOS Origin are based. (The Philips factory has been in Eindhoven since 1891. Since then, the region has attracted businesses in IT and technology.)

The growth of the High Tech Campus Eindhoven has led to Eindhoven becoming a major technology and industrial hub: 30% of jobs in Eindhoven are now in technology or ICT, in Haarlem and Utrecht this is respectively 16 and 17%.

The two control regions were selected because they have similar size populations and a similar socioeconomic class. Schools in each region were asked to provide the number of children enrolled, the number having a clinical diagnosis of ASC and/or two control neurodevelopmental conditions (dyspraxia and ADHD). The participating schools in the three regions provided diagnostic information on a total of 62,505 children. The researchers found school-reported prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions.

Simon Baron-Cohen commented: “These results are in line with the idea that in regions where parents gravitate towards jobs that involve strong ‘systemizing’, such as the IT sector, there will be a higher rate of autism among their children, because the genes for autism may be expressed in first degree relatives as a talent in systemizing. The results also have implications for explaining how genes for autism may have persisted in the population gene pool, as some of these genes appear linked to adaptive, advantageous traits.”

Rosa Hoekstra added: “We need to conduct a follow-up study to validate the diagnoses and to test the alternative explanations for the elevated rate of autism in Eindhoven, including the possibility that children with autism may more often remain undetected in the two other regions. These results are important findings in the field of autism epidemiology, since they suggest regional variation in autism prevalence. In our follow-up study we plan to study the causes of this variation in more detail. This will help local authorities plan services appropriately for the number of children with autism.”

Read the research here http://www.autismresearchcentre.com/docs/papers/2011_Roelfsema%20et%20al_autism%20prevalence%20NL_JADD.pdf

Find out more about the Autism research Centre here:  http://www.autismresearchcentre.com/

New Autism Act Passes Final Hurdle

The National Autistic Society is today celebrating the passing into law of the Autism Act. The following is from their website:

The Autism Bill has made it through its final parliamentary stage and will now become the Autism Act. The Act is the first ever disability-specific law in England.

The Autism Act started out as a Private Members Bill, drafted by The National Autistic Society (NAS) and taken forward by Conservative MP Cheryl Gillan. The Bill was backed by a coalition of 16 autism organisations and had overwhelming parliamentary support, being backed by all the main political parties.

The adult autism strategy

The Autism Act will guarantee the introduction of the first-ever adult autism strategy, which will set out how local services should be improved to meet the needs of adults with autism.

The strategy will cover a range of issues including health, social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation on local authorities and NHS bodies to meet certain requirements.

The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

You can read more here

Congratulations to the NAS and Cheryl Gillan MP.

Don’t Write Me Off – NAS campaign

The National Autistic Society has today released figures showing that only 15% of adults with an autustic spectrum disorder are in full time paid employment.This means that 85% of the 300,000 people with an ASD may only find part-time work, most probably low-paid and rely on family for support and benefits for income. The NAS also says that many of those who do rely on government help are finding it extremely difficult to navigate the benefits system since changes were made to incapacity benefit.

From The NAS Campaign, Dont Write Me Off

From The NAS Campaign, Don't Write Me Off

We are not talking here about the work-shy, we are talking about people who want to work, to have some level of independence but who find the world just isn’t set up to help people like them. The NAS is launching its ‘Don’t Write Me off’ campaign and says a key problem is that staff at the Jobcentre Plus, where jobs are advertised and who decide which benefits someone is entitled to, have a lack of understanding of autism.

This statistic is extremely worrying for us as a family with two sons with Asperger’s Syndrome.Although our children are both in a school where learning skills for life is an important priority, what happens to them if they encounter problems through ignorance or prejudice from those in authority when they go out into the wider world? It is the aim of the school that by the time they leave, they will be as well equipped as anyone else, if not better, to deal with adult life but as we parents of ASD children know, for them, unexpected and unforseeable events can be extremely difficult to deal with.

The NAS found that:

  • just 15% have a full-time job
  • one-third are currently without a job or access to benefits
  • 79% of those on Incapacity Benefit want to work.

The National Autistic Society is demanding that the system should be made to work for people with autism and the Government must deliver on its commitment that no one should be ‘written off’. It says adults with autism need:

  • Employment and Support Allowance to work for them
  • Jobcentre Plus staff to understand and meet their needs
  • a national strategy to transform access to employment.

I have just emailed my MP, Jeremy Hunt in Surrey South-West to ask that he supports this campaign. You can do the same with your Member of Parliament using this link: http://www.dontwritemeoff.org.uk/ It takes just a couple of minutes and you can feel satisfied that you have done something today to help people with autism.

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Asperger’s Links Blog

The new Asperger's Links site

The new Asperger's Links site

I’ve just started another new site which concentrates on resources for people affected by or interested in Asperger Syndrome. It’s called Asperger’s Links and already has several sections, such as Help & Advice, Forums, ASD Blogs, Education etc.

I started this so people can find the links and read a short piece about the site before visiting. They’ll also know that the sites come recommended.

I’m looking for ideas for new sections and for good links. If you have or know of a good site to add, leave a comment in the relevant section and I’ll add it. If there is no relevant section yet, leave a comment in the post called “Your category ideas” This way we can share knowledge and add to the list of sites you find interesting because if you find it interesting, so might someone else who would never otherwise have come across it. Look forward to hearing from you!

Give ASD children the school provision they need

The Times today (Saturday 13 June 2009) has an article about children with special needs being excluded from school. It points to a recent survey showing that 55 percent of parents of children with autism saying their child had at some point been unofficially excluded from school.

Other figures in research by the paper show that although children with special needs make up a small proportion of children in schools, they make up a huge percentage of those excluded. The problem is worst in primary schools, largely because of a lack of resources.

I think that it is not just a lack of resources but the fact that schools are increasingly expected to cope with children with  emotional and behavioural needs as well as autism, with little or no extra training. A mainstream teacher should be just that – a teacher who teaches mainstream children. He or she is not trained to be a special needs teacher and should not be expected to be one just because the government says so-called ‘inclusion’ is key.

The situation is made worse by the lack of specialist places for children with special needs. With the closure of many special schools and lack of places for children with conditions such as Asperger’s Syndrome in the first place, these children often end up with an inadequate education because they have difficulty accessing the curriculum in the same way as their ‘normal’ peers. They also have problems making friendships because they are perceived by other children as ‘weird’ and who wants to be marked out as being friends with the weird kid? This leaves the ASD child socially isolated, sometimes bullied and learning that they have no place in ‘normal’ society.

There are those whom I have heard say (including the Schools Minister Sara McCarthy-Fry), ‘Well, they’ll have to mix with all sorts when they’re grown up, so school is a good training ground for when they’re adults.’  This makes me incensed; so, they should get used to being friendless, excluded, shunned and bullied because it’s going to happen to them as adults? Is that what they would want for their children? Secondly, it is not true that they are likely to mix with all sorts of people when they are adults. We all live in fairly small mini-societies and communities where we tend only to meet people broadly similar to ourselves, unless you are someone where it is your job to mix with all sorts of people such as those in public life or public service (note the word ‘public’). This is hardly the likely career path of someone with ASD. Unless of course, they get the proper training when they are young.

If they can’t get this specialist training at mainstream school because of a lack of resources and expertise, where are they going to get it? At a special school? Don’t be silly, they’ve either been closed or are over-subscribed.

It then falls to the independent sector to fill the gap. These independent special schools usually cost a lot of money because that’s what it takes to provide suitable specialist help to give these children a shot at a reasonable life. I say, if that’s what it takes, then that’s what it takes and the Local Education Authorities should cough up and pay unless they’re willing to find capital resources to invest in their own facilities.

There are good state special schools that can provide for children with severe special needs. But it is those with higher-functioning autism who are left to cope in mainstream school with or without support because there’s nowhere else in the state system for them to go.

My boys, both with Asperger’s, have experienced both mainstream and independent special school. I have nothing but praise for the teachers in their mainstream school; they did their best given the resources and time they had at their disposal. But it was not enough and I am sure they would be the first to admit it. Now at their independent school, they have the vital small class sizes they need, specialist teachers, access to Speech and Language and Occupational Therapy where needed, counselling when required and mentors who keep in close touch with them.

I was told by one SENCo at a good secondary that they could cope with children with Asperger’s and sometimes she didn’t have a problem for ‘months on end’ until something kicks off and it all goes pear-shaped. At our school, this never happens. Things never get out of hand because they are not allowed to. It’s a small school and teachers know what’s going on with the boys so things can’t kick off in the first place. That’s the difference.

My boys are getting the social and key skills training they need to help them cope with the ‘real world’ as well as a good academic education. For them, you can’t have one without the other. I had to work hard to get the LEA to pay for one son and I’m still waiting on the outcome for funding with the other. Until then we’re paying £12,000 a year ourselves which is not easy to find.

The point of ‘inclusion’ is to be included in society when they are adults, not stuffed into a one-size-fits-all classroom in the hope that they may learn social skills through osmosis. That’s politics at its worst, where dogma overcomes common sense and expert opinion.

Mother behind autism advert meets Brown – London Evening Standard

Mother behind autism advert meets Brown – London Evening Standard

A mother who wrote a message to Gordon Brown on billboards across the capital to highlight the plight of autism sufferers is to meet the Prime Minister today.

Polly Tommey, from Hampton, whose 13-year-old son Billy has the condition, said she would use their meeting to call for more support for thousands of people in Britain. Her autism charity estimates the Government could save £508million a year by giving jobs to people with the disorder.

She said: “I’m delighted and even thinking of voting Labour for the first time in my life after this. But what we now need are results.”

Mrs Tommey, 42, had made repeated attempts to reach Mr Brown and other ministers over the past few months but failed to get any response until now.  The mother-of-three had accused the Government of ignoring the “overwhelming stress and demands faced by families of those with autism”.

More than 500,000 people in Britain have the condition. She said: “Billy has a bleak future in our blinkered world. It is not fair that his potential is dismissed.

“Unless the problems of autism are understood and support is more widespread, we will see an underclass of desperate autism households.”

Mrs Tommey, a former actress who has worked as a body double for Charlotte Rampling, said she also asked to meet Tory leader David Cameron and Liberal Democrat leader Nick Clegg, but both said they did not have time. Her charity, the Autism Trust, was founded by Mrs Tommey after Billy was diagnosed aged two. Her £500,000 “Dear Gordon” campaign, at 76 sites across London in April, was funded by sponsors and advertising outlets.

Source: Sophie Goodchild, London Evening Standard,11.06.09

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

UK lacks Adult Autism/Asperger’s Services

The news today that eight out of ten doctors need more help to spot autism shows the huge gap in services available, particularly for adults with ASD in the UK. The National Audit Office survey found that thousands, especially adults, are failing to get the right diagnosis and hence the right treatment or access to support services that they need.

Eighty per cent of doctors said they felt they needed additional guidance and training to help them identify and treat people with autism more effectively. Indeed, outside this report, this figure is echoed in schools, where many staff say they also need additional training to help children affected with High Functioning Autism and Asperger’s Syndrome.

The reports highlights the fact that high-functioning people with ASD are particularly vulnerable. They are often missed because around apparently 200,000 adults with autism do not have a particular learning disability. This group, the report “Supporting People with Autism through Adulthood” says, often fails to secure appropriate support, as health and social care services are mainly set up for those  with a learning disability, a physical illness or disability, or a mental health problem (which autism is not).

Almost two thirds of local authorities say they felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

The truth is that often people with Asperger’s Syndrome are of above average intelligence with areas of particular strengths, but because of their social and integration difficulties, they end up either in low-level jobs or on benefits because they do not have the interview skills to secure appropriate work.

The report says “Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum. Specialist support and joint working across all areas – clinical, social and employment – could improve the transition from childhood to adult services, make services more effective and improve value for money.”

There are several bills concerned with autism going through parliament at the moment, as mentioned in earlier posts on this blog. For children, there is more recognition that children affected by Autistic Spectrum Disorders need additional support in social skills but even so, a recent Cambridge study found that for every three children diagnosed, a further two go undiagnosed. If these children go through school and into the bigger world without intervention, they will only add to the figures this latest NAO study has found.

I believe that teachers or at least one member of staff in schools, preferably the SENCO, should be well trained in spotting autistic spectrum disorders and should have the backing of the school to do something about it. However, it is sometimes the case that when the school does spot a need, they do not get the support of the parents to do something about it.

A further problem is that when people who have received services throughout childhood then reach adulthood, the support they have had simply disappears and they are left to cope by themselves, or often remain in the family home with ageing parents, unable to forge an independent life because of their ongoing difficulties. Indeed, the NAO report says a key factor would be that if the proportion of the local population with high-functioning autism were identified by specialised services and given appropriate support, they would be more likley to be able to live more independently or to obtain and retain employment. The report estimates that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.

To read the whole report, click here.

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

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,

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

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/

The dog, the hand-washing and the ASD child.

As you may have read, we’ve just got a puppy, a labradoodle. He’s very cute and has transformed our elder ASD son’s life. The dog is the first thing he thinks about in the morning and the last thing on his mind at night. He’s even okay at scooping the poop without fuss, although washing his hands afterwards is a bit more of a problem.

Our younger son, who loves dogs, has got the hang of the hand washing, just not the dog. He is definitely not the pack leader where the puppy is concerned. The dog jumps and nips at him all the time which Son2 finds very distressing because he loves to pet him. The hand-washing though is going over the top. Son2 has always been known as a very, very clean child. He never forgets to cleanse his hands after using the lavatory and spends so long in the shower I’m surprised Al Gore isn’t on our doorstep offering a lecture on water wastage.

Every time Son2 so much as brushes against the puppy with his hands, he’s at the sink, massaging soap into his fingers and doing an inadequate rinse job. It’s become so bad that in the space of two weeks, he’s come down with eczema on his knuckles. Turns out, he was using washing up liquid instead of handwash and, despite it being an eco-friendly detergent, it’s apparently not done his skin any good at all. He’s now been prescribed a special handwash by the doctor that he can use as much as he likes and he carries a tube of aqueous cream around in his pocket for use at school. Sadly however, I think getting the dog to see him as anything more than another play thing is going to take longer to sort out.

Genetic breakthough in autism

Genes ‘have key role in autism’ – BBC News

Scientists have produced the most compelling evidence to date that genetics play a key role in autism.

They highlighted tiny genetic changes that appear to have a strong impact on the likelihood of developing autism and related conditions.

The changes influence genes which help form and maintain connections between brain cells.

The Nature study highlighted one common genetic variant which, if corrected would cut cases of autism by 15%.

http://news.bbc.co.uk/1/hi/health/8020837.stm

I knew it was my fault…

Of course it’s our fault..

Mother’s antibodies may contribute to autism

Fri Apr 24, 2009 8:18pm EDT

NEW YORK (Reuters Health) – While a mother of an autistic child is pregnant, she develops an immune response to her fetus’s brain. As part of that immune response, her body develops antibodies that can attack the fetal brain. Now, in new research in mice, scientists have discovered that the mother’s fetal brain antibodies are circulated back to the fetus through the placenta, possibly triggering inflammation in the brain that could eventually result in autism.

http://www.reuters.com/article/healthNews/idUSTRE53N55320090425?feedType=RSS&feedName=healthNews

The new arrival

I am not a doggie person. My husband is not a doggie person. And yet, yesterday, we brought home a puppy. Leo the Labradoodle.

We have read that dogs are supposedly good for children with autistic spectrum disorders and so, putting our own lack of need for a furry friend to one side, we searched for an allergy-friendly pup (as my husband is allergic) and Leo is who we found.

Leo the Labradoodle

Leo the Labradoodle

He has taken to his crate and dog bed as if it had been his from birth. He is already asking to be let out for his business and the boys have fallen in love with him, as have we. Son2, however, is not so keen yet on actually touching him and every time he does, carefully washes his hands immediately afterwards. Having a dog has made no difference however, to Son1’s hand-washing habits, or lack thereof.

All of a sudden, Son1 & Son2 have become puppy experts, telling us what to do and how to do it. They have already spent much less time in front of the TV and used less computer time as they check on their charge and ensure he has everything he needs. This is actually not too much as he sleeps a lot of the time at the moment.

Neither child has taken the opportunity to scoop the poop yet, but it will only be a matter of time and when he is big enough to go for walks, this is Son1’s department as he is rather like a puppy himself and needs walking every day.

I have taken to heart The Dog Whisperer‘s advice that you must be pack leader to be in charge of your pooch and I have decided that this is the same for raising boys too, even those with Asperger’s, if not more so. I think this whole dog thing is going to work rather nicely.

Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

SNM Holiday 3: Incident on the beach

So, we were well into the holiday, we’d done Goonhilly Earth Station where Asperger’s Son2 had had a tantrum because he wasn’t heavy enough to go on the Segway Tour and then Asperger’s Son1 had a tantrum because we said if one couldn’t go then no one would (to avoid unbearable crowing afterwards). We’d done the Eden Project where despite all the amazing things to see in the biomes, the restaurant and the shop were still the most popular attractions.

So it was Thursday, it must be Tintagel. I was particularly looking forward to going up to the castle as the last time we were there we’d gone the wrong way and had to climb down a steep grassy embankment to get to the castle by which time my legs were too wobbly to go up it. This time, we knew better. The five of us, including Grandma, went down the equally steep hill to the castle but at the pay station, Son1 decided he wasn’t going up the rocky outcrop path to the castle in case he fell off and tumbled down the cliff into the sea. Now, this is a  perfectly safe English Heritage property, not for the faint-hearted, granted, as it is a bit of a climb, but safe nontheless. But he was adamant. He was not going and he was more than a little worried about his Dad going as well in case he came careening off the edgeinto oblivion and then he’d just be left with me, No-Fun Mum.

His fears were both irrational and not, as he is rather accident prone and if anyone could fall down a perfectly safe path and crash on to rocks at the bottom, it would be him. But once he had firmly refused to go up, Son2 decided he wasn’t going up either, so my husband and mother-in-law went up by themselves, leaving me to sit at the cafe and watch their progress, while the boys drank hot chocolate. One day I will get up there. One day, before I am too old to manage it.

After lunch, and further fortified by Granny Wobbly’s Handmade Crumbly Fudge (not to be missed at Tintagel), we set off in search of a beach further down the coast. The tide was on its way out and there were surfers braving the early April weather to catch a wave or two. The boys made do with rock-pool hopping and exploring and were having a great time, which meant we were too.

What happened next?

What happened next?

Son1 then starts jumping from side to side of a stream leading to the sea, bordered by boulders, some covered in slimy seaweed. Please stop that, I asked. Please stop that Grandma asked. No, we were told, it’s fun. You can guess what happened next, can’t you?

Hey, who left that slippery seaweed under Son1’s feet? A mighty splash and he lands, fully clothed, in the water. In April. Of course, it wasn’t his fault. Of course not. It was the seaweed. It was the rock. It was our fault for not buying him some shorts at the surf shop that he had wanted.

So, he got his shorts and a T-shirt as well. The nice lady, a mother of six herself, had seen it all before and put his wet things in a carrier. Son1 is now the proud owner of a  very cool Trebarwith Strand Surf Shop T-shirt and is none the worse for wear and I am just glad the lodge we stayed in had a washer/dryer.

I just imagine how boring our lives would be without our own home-grown Comedy Central players. Most people look at us parents of Special Needs children and think how sad we must be. But it’s laugh or cry. I know which I would rather do. And just think of the stories we’ll have to tell their children.

HolidayPost Number Two here

SNM – Holiday 2 – The Zoo

We booked a day as a zoo-keeper at Newquay zoo for the boys. This was an unparalleled success! The day involved being taken around the zoo with a zoo-keeper, togged up in a special ‘junior zoo-keeper’  T-shirt, feeding the otters and the penguins and generally get a behind-the-scenes look at the life of a zoo keeper.

Boys Feeding The Otters

Boys Feeding The Otters

Every time we’ve been to the zoo in the past, it has been a race around the enclosures to see who could get to the shop first. We routinely spend more time in the shop than actually looking at wherever it is we’ve gone for the day. But this time – magic! Mark, our guide for the day, led the boys around, helped them prepare stuffed rubber ‘kongs’ for the monkeys, complete with mealy worms that Son1 refused to have anything to do with and explained all about the animals we saw along the way. The boys were fascinated and never lost focus; a miracle!

He showed them poison frogs being bred in a back-room, baby lemurs, talked to them about the red pandas and helped them to feed the Asian otters and, the boys’ favourites, the Humbolt penguins. They learned so much in a morning and were happy to chat away to Mark, even though they don’t generally do strangers.

At the end, Mark told me that he was always amazed at the number of zoology students who had Asperger’s – they had, he said, the equivalent of ‘green fingers’ with animals. Son1 is now determined to study zoology and has decided not to mess around in Science anymore. I’m sure his teacher will be most relieved.

Holiday 3: Here

Holiday 1 Here

Surrey to review SEN Assessments

I recently attended a Partnership with Parents workshop in Surrey. The subject matters were an explanation of the new SEND rules given by one of the co-chairmen,an update on the Lamb inquiry and a presentation from the new Head of Surrey SEN, Debbie Johnson, asking ‘Why do so many parents appeal against Surrey’s ‘Refusal to Assess’ decisions’.

I was particularly looking forward to the latter, as although my younger son is statemented, my eldest son had recently been refused an assessment by Surrey. Ms Johnson was a very impressive speaker and was concerned about Surrey’s position at the top of the charts for councils that have appeals registered against it. Much to the surprise of many in the room, she said that what should be happening is that if Surrey LEA was not going to defend its decision at the SEND Tribunal or thought it might give way if an appeal was launched, then it should actually not be refusing to assess in the first place. This was new! Someone with common sense! We all sat up a little straighter.

Ms Johnson said there was a lot to be done in Surrey and the feedback she was getting was that parents weren’t being listened to, the process wasn’t helpful and she was going to change that. She said the changes had to ‘unbend the system’ and make statements ‘fit for purpose’. She would be disbanding panels that took parents around in circles and stop decisions being made that were not clear for either the parents not the authority.

It also appeared from figures she presented that, that in line with the large number of refusals to assess was an equally large number of pupils in Surrey diagnosed with ASD. Could these stats be related? Could it be that a lack of expertise within county provision in the field of high-functioning Autism and Asperger’s, coupled with an increasing number of parents unwilling to go down without a fight is at the root of Surrey’s large number of appeals? As Hong Kong Phooey would say .. ‘Could be!’

Ms Johnson then described the difficulties faced by a highly intelligent child with Asperger’s in a mainstream setting. She described my son to a tee. Afterwards, I spoke individually to her and she agreed to visit my son’s case again.

And guess what? True to her word, this week I heard that the decision has been reversed, my son is now going to be assessed and I am so relieved that this part of the application is now resolved. There was also additional evidence I presented to them as part of the reconsideration and I am sure this made some difference; having been turned down I had sprung into action and prepared an fulsome appeal so I was able to send it to them to see if we could avoid the necessity of going to Tribunal and it seems this has had an effect. The lesson is, if you believe strongly in your case, DO NOT give up! Those who make the decisions are only human, just like you, errors can be made or minds can be changed if you provide a convincing enough case. But you have to put the effort in – don’t ask and you don’t get.

Back at the workshop, in spite of her ‘new broom’ presentation, Ms Johnson wasn’t let entirely off the hook – many parents had serious grievances about the LEA’s past practices, including one family who had been threatened with costs (illegally) if they went ahead with a Tribunal hearing the next day. To her credit, Ms Johnson tackled the issues head on and took the particular case mentioned extremely seriously. I might pity the hapless LEA employee who made the threat if it hadn’t been such an unethical thing to do in the first place.

I left feeling vaguely cheered, though it remains to be seen how much difference Ms Johnson’s new broom makes to the way Surrey carries out its practices. I, and parents like me, will be watching closely.

See the next post ‘The SENDIST Tribunal’ for information on that part of the workshop.

Diary of a Special Needs Mum Pt 1

I was talking to the head of the Juniors Department at my sons’ school the other day. She noted that parents of children without special needs had no idea how tough it was for parents who did have children who are not so-called “normal”. I hadn’t considered this particularly before, even though both my boys have Asperger’s Syndrome, so I lay before you a precis of a couple of my days and you can make your own minds up. Here is part one, between six am and 7.30am on a school day.

Friday morning, wake up at six. Lovely husband brings breakfast for everyone; the high point of my day. Neither boy wants to get out of bed. We need to leave by 7:30 to get to their special school twenty miles away on time. Son 1 (10) eats his breakfast and hides under the covers. Son 2 (8), complains that he doesn’t like his breakfast and asks for something we don’t have and nothing else will do. Tantrum ensues. Eventually settles for toast after setting everyone’s nerves on edge with ten minutes of whining that he never gets what he wants. Special Needs Mum (ie, me) heads for shower at 6.25 as Son 2 disappears into his room and shuts the door.

Ten minutes later, Son 1, who insists on having a fan blowing full blast in his face all night or he can’t sleep, drags himself out of bed and goes into his brother’s room to bother him. More whining and some screaming ensues. SNM is forced to stop getting ready and intervene. Is ignored. Count Son 1, following technique learned from 1-2-3 Magic book. Son 1 reluctantly disengages from attack on Son 2 and slinks back to his bedroom on the verge of ‘3’. Notices that Son 2 is sitting, naked, playing Lego. He had begun to get dressed, but got distracted. SNM puts his clothes next to him and tells him that Lego time is finished and he must now get dressed, then returns to drying hair, nerves frayed.

7am: SNM gets snacks and drinks ready for boys’ bags. Son 1 is dressed and sitting watching Disney Channel. SNM turns off TV because it isn’t allowed in the morning, something Son 1 knows very well but doesn’t stop him from complaining and trying to switch it back on again. Is sent to room to put his tie on.

7.15: Son 2 still playing Lego so SNM goes in and sits with him, handing him each item of clothing in turn until he is dressed. Son 1 makes an appearance in doorway to resume tormenting, sees SNM and retreats hastily. SNM realises Son 1 has stolen Son 2’s tie. Son 2 is incensed, pushes past SNM and leaps on his brother, trying to rip the tie from around his neck. SNM peels Son 2’s fingers from around Son 1’s neck and demands the return of the tie.

Son 1 whines, “But then I won’t have one,” completely missing the point that it isn’t his in the first place. Son 1’s tie is finally located, stuffed into a small pocket of his school bag, along with a letter from school saying they need some money for an author’s visit. Today.

SNM rummages in purse to find money, has none, catches husband on way out who has just enough and leaves for work with no cash left in wallet. SNM tells boys to clean their teeth and then searches, unsuccessfully for purses to put the money in. Both boys’ purses are missing.

Screams heard from bathroom. Five minutes to go before leaving time. Son 2 is weeping because Son 1 kicked him. Son 1 says it was because Son 2 poked him up the bum and called him fat (he isn’t).

SNM feels final nerve-ending tightening to breaking point. Takes deep breath, orders sons downstairs to put shoes on.

Son 1 can’t find his shoes. Son 2’s are under the sofa, covered in mud. SNJ snatches them away and rubs them over with a damp cloth. Son 1 finds his shoes, also muddy, puts them on and runs upstairs to get his bag, leaving trails of dried mud on the carpet.

SNM’s eye begins to twitch.

7.35, out to car, only five minutes late. Son 2 stops short of getting in, declaring he needs to find his Nintendo DS for the journey and refuses to get in the car until he has it, disappearing back into the house. Goes upstairs in shoes, leaving damp muddy marks on carpet from the bits SNM missed when rubbing them over. Five minutes later, re-emerges and screams at Son 1, who has taken the front seat when it’s apparently not his turn. SNM reminds Son 2 it is, in fact, Son 1’s turn who says helpfully, “Yeah, idiot, see, it IS my turn.” Son 2 tried to hit him but SNM catches his arm mid-air.

Time: 7:42. By now, traffic has built up on the motorway slip road that wouldn’t be there if we’d left at 7.30. Join queue of traffic as Son 2 turns on DS, with jingly jangly noise grating around SNM’s brain. But at least we’re on our way and that’s something to be grateful for.

Now, those mums with “normal” children would probably say, pursed of lip, that SNM doesn’t have control over her children, or that their own children wouldn’t dare to behave like that or perhaps, even suggest that SMN’s parenting skills are lacking.

I say just getting my boys into the car every day for their trek to school is a triumph. When my younger son was diagnosed with Asperger’s, one mum said to me “Well he isn’t that bad, is he? It’s not as if he’s severely autistic or anything.” To her, because my son didn’t fit her “autistic stereotype”, we must be just exaggerating or trying to pass off bad behaviour as a medical condition to excuse our bad parenting. Perhaps she’d like to swap her morning routine with me and then see how smug she is. But I know that my tale above will be familiar to thousands of other parents of children with special needs and for others, it’s probably not half as bad as their mornings. But you know, my sons’ teacher is right. Parents of neuro-typical children are often quick to condemn when they see children behaving badly, without realising they have a hidden disability such as Asperger’s. Perhaps if they walked in the shoes of a special needs parent for even one morning, they might think differently. And would I swap my children for theirs? Actually, no I wouldn’t because though they can be tough to deal with, they’re mine and to me, despite everything, they’re perfect.

Part two will follow, when I summon the energy to do it. Thanks for reading.

Update: Find Part 2 here

It’s all about the school.

Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us along the way to getting the best we can for him but now he has started at an appropriate school for his needs, he no longer needs medication to help him focus because there are only nine boys in a class and he is taught in the way he learns best (imagine!).

His nurse said there’s nothing she can now offer that he isn’t getting at school and she’s right; it’s all about the school. A paediatrician at the centre said the same thing: one size doesn’t fit all and the right school can make the difference between a life of underachievement and a fighting chance of success.

What chance does an ASD child, even with TA support, have in a class of thirty (several of whom probably have behavioural difficulties or other issues) when that child has sensory integration problems and needs a quiet environment to be able to put pen to paper at all? What chance for success does a bright child have who reads several years ahead of his age but can barely write, when he’s left to fester in a remedial English group where he refuses to work because he feels his intelligence is being insulted?

This is the conundrum faced by mainstream schools when trying to educate children with complex needs. It’s just not possible to put him in a group with his intellectual peers because he thinks so differently and can’t keep up with writing speed. But putting him in a group with children who write as slowly as he does means he’s frustrated and not challenged. The same is true for many bright dyslexic children; where do you put them if they’re clever enough to be in the ‘top’ stream, but whose reading or writing difficulties mean they can’t present their work as well or whose thought processes don’t follow ‘the norm’?

Can mainstream provide sufficient expertise and support for these children? Politicians pushing the ‘inclusive’ agenda say it is perfectly possible and perhaps in a very few schools that have sufficient specialist staff and resources, this may be the case but for the majority, it just isn’t.

I was told when my son was in mainstream that there were five accepted methods for doing maths at his level. My son had his own, sixth, very complicated method and even though he would get the right answer, I was told he had to conform to one of the methods laid out in the national curriculum. Good luck with that, I thought, because you’ll have a job on your hands.

I have spoken to many highly experienced teachers, special needs Teaching Assistants, Outreach staff and Clinicians in the past few years. NOT A SINGLE ONE believes inclusion for children with complex learning styles or difficulties in the answer. Not one. Why are their views being ignored in the relentless push for everyone to be taught in one setting? Please, if you know, make a comment and enlighten me. It’s possible that I and they are all misguided souls. But somehow, I don’t think so.