Duck Season, Rabbit Season. (In memory of Debbie Storey)

Duck Season, Rabbit Season

This blog is written by Carole Rutherford and dedicated to the memory of Debbie Storey, who died on May 24th 2005:

Debbie (who had AS) died after the mother of all fights to remove her son’s names from the ‘at risk register'. She was fighting this decision after allegations that she and her husband were using their autistic sons to meet their own emotional needs. They removed their sons from school to educate them themselves at home because their needs were not being met, and the boys emotional well being was suffering. 

There is a very famous cartoon staring Bugs Bunny and Daffy Duck where they argue with one and other about what hunting season it is, while trying to convince Elmer Fudd that it is not the right season for him to be hunting them. It is a very funny cartoon where the two stars of the show pit their wits against each other in what is really a fight for survival.

For parents who have children with autism it is often ‘autism season’.

While I fully accept that there will be parents who have children with autism who are not acting in the best interests of their children (parents who have children with autism are like any other cross section of society) it would appear to me that no matter what method or directive is being used to try and locate parents who are not acting in the best interests of their children, parents who have children with autism remain amongst the most vulnerable parents who are still getting caught in the line of fire. 

Parents who have children with autism have a history of being at risk and being told that they are not acting in the best interests of their children.

Ignorance is not bliss and a little bit of knowledge can be a dangerous thing when the subject that you know 'a little bit about' is autism. 

A lack of autism specific training and understanding can have a disastrous impact on the lives of parents as it did for Debbie Storey and her family. 

Many of the signs and symptoms of autism can be attributed to other things. Parents who have children with autism can all too often find themselves being pursued by overzealous professionals who have little or no understanding and have received no autism specific training. 

In 2001 the Department of Health issued draft guidelines on recognising the signs and symptoms of children in whom illness is 'induced or fabricated by carers with parenting responsibilities'. It read like a check list for autism. 

Concerns about these guidelines were raised by the autism community and the National Autistic Society, who met with Jacqui Smith - the then Health Secretary - and raised grave concerns about this guidance document and the impact it would have on parents of children with autism. The guidelines were changed but parents who have children with autism still find themselves being accused of exaggerating the needs of their children. In fact parents who push too hard to have the needs of their children met can sometimes find themselves in the glare of a very unwelcome spotlight. 

Autism-in-Mind met with Lord Filkin (Minister for Education and Skills) along with the National Autistic Society and PACE on the 1st of March 2005, following the Debbie Storey case. This meeting was to highlight the urgent need for front line professionals, working in social care, to receive appropriate training in autism. All attending wanted to ensure that families would not have to suffer accusations of abusing their child in the way that Debbie and her family did. 

Despite this issue being raised at a national level, and 7 years on, the situation remains the same. There are parents who have children with autism being told by front line professionals that they are not acting in the best interests of their children. 

Front line professionals still lack appropriate and autism specific training.

There are concerns growing in the autism community about yet another initiative aimed at educating front line professionals, enabling them to spot and handle ‘highly resistant parents’. 

Parents who have children with autism are sometimes seen as 'highly resistant parents', because they challenge and oppose professionals who have little understanding of their child and how their condition impacts on their lives. Parents fight for the needs of their child because their complex, often subtle, and fluctuating needs are not being met. 

Just because a disability can be invisible does not mean that parents are making up the impact that it can have. 

Can we be assured that professionals who are been trained in practical strategies to tackle obstructive behaviour and disguised compliance have also been fully trained to understand and with a depth of knowledge in autism? 

Only when we can be assured that all of our front line professionals who are working with families with autism have been appropriately and specifically trained will the autism community at last be able to feel at peace and trust the professionals in their lives. 

Debbie Storey was a member of Autism-in-Mind Campaign Group. Debbie won her fight for her children but then went on to lose her life because even after proving that she and her husband were not “consciously or unconsciously using their children to meet their own needs.” She was too afraid to press the medical professionals to find out why she was in so much pain and to pursue a diagnosis for herself, when she did it was too late. Her sons now live without their mother who put all her energy into protecting them. 

We must fight to ensure that no parent is ever placed in the same position as Debbie. 

Carole Rutherford

Campaign Manager and Co-Founder Act Now For Autism

Co-Founder Autism in Mind

My Life With Autism - Keep Pedaling

During Autism Awareness Month we featured guest blogs from some of our supporters talking about their experience of autism. One post in particular, by Debbie, really struck a chord as she wrote a powerful piece on the depression she has lived with before and after her son was diagnosed. 

Debbie wanted to write more about the way she has dealt with her depression and some of the day-to-day struggles she faces: 

Keep Pedaling

I have always enjoyed riding my bike, but I had no idea how important cycling would become to me or that it would play a large part in coping with, and controlling, a serious illness.

My illness is depression, and although it can be well hidden (I have been an expert at this) it is a devastating condition which can impact on every aspect of daily life.

I was diagnosed with depression in 2008, having suffered silently and privately for a number of years. I do not know how many years. It sneaks up on you, gradually enveloping you in sadness. You feel apart from everyone else, almost in a dream-like state. It becomes difficult to plan ahead, almost impossible to make decisions. Anyway, that is how I experienced it. Causes can be many and complex. I do not know when depression caught me, but I do know that it was related to the suspicion, denial, diagnosis and manifestations of my precious wee boy's autism.

Matthew, now almost 10, is a beautiful, happy, loving wee boy. He has the cognition of, perhaps, a four year old, and communication skills of a younger child. I won't detail the years of denial, despair and finally acceptance. I won't list the difficulties we have faced on a daily and hourly basis. Suffice to say that in 2008 I “woke up” and found that I was very unwell.

I owe the initial recognition and treatment of my depression to having to take Matthew to see our GP that summer. The doctor recognised that I was unwell and told me to come back and see him myself. So I began treatment. But something happened that autumn which would also prove significant. I saw a small write-up about a new cycling club, called West Lothian Clarion, in a local paper.

I read through the article a couple of times. There was an email address and a website. I could check them out and make contact without picking up the phone. I emailed the club secretary Matthew Ball and arranged to meet up the following Sunday for a club run. When I arrived I knew I had made a mistake. There they all were, skinny guys on skinny bikes, with curly handlebars, head to toe Lycra and funny shoes. There I was on my Raleigh Metro, with my one pair of cycling shorts and an old pair of trainers. I nearly fled. I was making a complete fool of myself. Who was I to think I could ride alongside these guys? If the club secretary, and everyone else I spoke to that morning, had not been so welcoming, I would have turned tail and run. But I was persuaded to ride a few miles with them.

As we set off, the clicking of cleats into pedals nearly made me change my mind again. But the guys very politely rode at my pace while I sat about a foot higher than everyone else, puffing and red faced as we climbed out of Linlithgow. I felt totally foolish and out of place. But I felt something else – inspiration. I had something to aim for, something that had nothing to do with autism or depression. While I struggled back to my car, and home to nurse my aching legs, the Clarion guys were off on a 60 mile jaunt through Fife in the crisp autumn sun. Did I want to join in? Just a wee bit!

I needed a better bike – that much was clear, and I needed to improve my fitness. I had time during the day to ride my bike while the children were at school. I begun riding more on the road, planning routes that took me further from home. When I felt a bit fitter, I got a new bike, a “fast hybrid”. No, I wasn't ready for those curly handlebars yet. I seriously doubted that I could ride such a bike. But I went back to the club, about a year after I had initially made contact. Still a bit slow, still feeling out of place, but I joined this time.

Joining West Lothian Clarion has been wonderful for me. I have met lots of new people. People who don't know me first as the struggling mum of an autistic child. As the mum who avoids speaking to people, unable to say much for fear of the tears. My club mates know me primarily as someone who rides a bike.

As my cycling fitness improved, so did my mental health. I began to feel happier, made better use of my free time to fit in the cycling, and had a hobby that could take my mind off things, or give me the opportunity to think things through. An amazing amount of frustration can be worked out on a few steep hills. Instead of holding everything in, I can take it all out on my legs. Though they don't always thank me for it!

The feeling of riding my bike, out in the countryside, taking in the fresh air and the views always puts a smile on my face. The rush of speeding down a hill at 30+ miles per hour, for someone who is not a born thrill-seeker, is just amazing. The wind in my hair and face. The feeling of heightened senses as I watch the tarmac roll beneath my wheel, hanging on tight, scanning for potholes, ever alert to the presence of traffic. Struggling up a steep hill with horizontal rain in my face and the huge sense of achievement when I finally reach the top. Getting in home and warmed up after a cold winter ride. Chatting with club mates on a club ride. Working in a chain-gang to eat up the miles on a fast road. Café stops for cake. I love it all.

But the feel-good factor lasts longer than the ride itself. When I know that I will have a stressful time ahead, I do my best to get some decent riding beforehand, as it sets me up for the challenge and gives me the strength to face whatever comes next.

And I have gone and got myself one of those fancy curly-handled bikes. I tap-tap along in my funny shoes and click in as I set off. Top to toe Lycra is the order of the day. These things make me faster and more comfortable as I spin round the countryside of the Lothians, Lanarkshire and surrounding areas. I have entered a few races, and this year I hope to break the 30 minute barrier for 10 miles. Ok, Victoria Pendleton and the like have nothing to fear, but I take huge satisfaction in how I have progressed. New ladies joining the club come to me for advice, which also makes me feel great. Cycling has done so much for me and I want to pass it on.

Everyone must find their own path, their own coping mechanisms. Cycling isn't for everybody. But if I was to give one piece of advice to anyone who finds themselves struggling mentally, unable to cope, it would be this: 

Find a hobby that you love, make time for it, and reap the rewards.

Act Now For Autism Response To The SEN Green Paper.

Act Now For Autism 

 
Act Now For Autism welcomes the news that the SEN system is to be reformed as currently it is a very complicated system, which varies from region to region and leaves many autistic children without support in education. We agree it is absolutely right that the Government should seek to introduce a system for the right support to be put in place for children who need it.

 
However, we are deeply worried that, as seen in the media today, it appears the Government is geared up to place focus on supporting children who have the most severe needs or those who are considered to have the most need. We don't disagree with this as such but by whose definition will children be catagorised?

It has immediately made us think (and has generated lots of outraged feedback from our supporters) those going to be most at risk of missing out within the new system are going to be children with autism and associated conditions. Parents are currently having to fight for years to get a 'Statement' and much of the comments on our Facebook networks today have been from parents asking 'what if our children get pushed even further back in the queue', ' like with the changes to the disability element of Universal Credit, it's like they're not disabled enough'.

A recent National Autistic Society survey indicated that only 65% of children with autism do have a statement and although 18% without currently get some support through School Action Plus, 44% of parents told them they are dissatisfied with it.

Where will the SEN reform leave children with autism who do not have a statement who get support through School Action Plus? The new system will remove the two tiers of School Action and School Action Plus by combining them - this might indicate a downsizing of the needs of children with SEN who have a diagnosis of a neurological disorder, like autism. We have grave concerns for the children who get little or no support via School Action Plus as it exists now.

Ministers also plan to form an 'expert panel' to look at which children should be classed as having "behavioural, emotional and social development difficulties" in order to prevent these issues/problems being “overused” by schools. Can we be assured that there will be an expert on this panel who understands autism?

Autism is by definition a communication disorder manifesting in disordered social, emotional and behavioural development - what support will be put in place to ensure these children are given the protection and support in education they need?

Act Now For Autism and our supporters have many questions about the proposed reform of the SEN system: how will a parent get support or onto the 'register' if they are 'offloaded' when the changes are implemented? If their issues are labelled as a purely behavioural/ emotional what will then happen, what support will they get if any? Who decides? Who assesses? How long will it take? Who advocates for the child? (We will be writing to Sarah Teather (Children's Minister) to find out more.)

At the root of all this is how we define special needs; an additional need for support when learning is just that but it can be and often is very different to the issues faced by a child with a diagnosis, a disability. That child will have lifelong needs but specifically throughout education we have to ensure those needs are met and judged on an individual basis.

Parents should not have to continually fight for adequate support for lengthy periods - many parents we speak to daily have faced and are facing a huge battle to get their child the educational support they need.

There must to be a robust system in place to differentiate between children who require perhaps to be placed in 'nurture groups' and children who have fluctuating, disabling lifelong conditions like autism.

Act Now For Autism Response To The Queens Speech

In the Queens Speech today, the Government announced a Children And Families Bill. Act Now For Autism fears that once again children with autism, many of whom currently don't have a Statement, will continue to have their complex needs ignored following the announcement that the Government plans to replace statements for children with a Education, Health and Care Plan.

Children with autism are some of the most vulnerable in the UK, with often complex needs. Despite this, children with Aspergers Syndrome or High Functioning Autism are often left sitting unsupported in mainstream classrooms.

Act Now For Autism hopes the introduction of the Education, Health and Care Plan will at last encompass every child with a diagnosis of autism (or traits but waiting for a diagnosis) and address their complex needs. It is sadly all too usual that once a child has a main diagnosis of autism the professionals involved stop looking at any additional issues they may have.

Levels of health related co-morbidity are high in autism. Many children will have dyspraxia and dyslexia and the vast majority have sensory issues that are often left unaddressed. Many also live with hypermobility syndrome (affects everything from how much they can tolerate PE to whether or not they are in pain when holding a pencil) dietary problems, sleep problems, epilepsy, allergies, etc.

Having an Education, Health and Care Plan would (we hope) mean the additional needs of children with autism, who are in mainstream schools, would have their other health needs assessed and hopefully strategies then put in place to support them.

The Department of Education has said that the Children and Families Bill will be 'the biggest reform in 30 years' and state that the main elements for children with special educational needs and disabilities are:

'SEN

-Replacing Special Educational Needs (SEN) statements and Learning Disability Assessments (for 16-25 year olds) with a single, simpler 0-25 assessment process and Education, Health and Care Plan from 2014
- Providing statutory protections comparable to those currently associated with a statement of SEN to up to 25 in further education - instead of being cut off a 16
- Requiring that local authorities and health services jointly plan and commission services that children, young people and their families need
- Giving parents or young people the right to a personal budget for their support'

Act Now For Autism welcomes that the planned legislation will create a legal requirement for joint commissioning between health and social care. We do however have grave concerns that without an Education, Health and Care Plan in place children with Aspergers Syndrome and High Functioning Autism will not be included in the data which will be recorded and drive the commissioning needs. If there is no data to include the specific needs of a group of children whose complex and specific needs have been ignored now for many years, they will continue to be failed.

Act Now For Autism calls on the Government to stop splitting the autistic spectrum up into segments and allow a system like in Scotland, where every child with additional support needs (diagnosed or not) is protected in education and afforded the right to support by the Additional Support For Learning Act (2009).  

We must ensure that every child with an autism spectrum condition will be given an Education, Health and Care Plan to ensure they can have all of their needs addressed and meet their full potential in education.