The Campaign Continues…

Follow Polly Tommey's Campaign Diary... 

World Autism Awareness Day

In the forthcoming General Election, how would your family’s vote be influenced by a political party – any political party - pledging solid financial support to people and families with autism; a party pledging significant support for autism services?

How would your family’s vote be influenced by a party that made The Autism Pledge?

As Polly Tommey’s campaign continues we need you to email her at polly@autismfile.com with your thoughts on how a promise of support would translate into votes from you and your family. Here are some of the comments so far:

‘Autism affects many more than the immediate family, I have parents, sisters, brothers, aunts and uncles that would vote for any party that helped people with autism. But we need a serious proposal and for the leaders to listen to what is really needed. It is a condition that must be placed as a priority.’ Polly Tommey, Middlesex, UK

‘I have never voted in my life and nor have most of my friends, but I would do if people with autism were given the lives they deserve. My friends would as well because we all know someone with autism now.’  Donna Cook, London, UK

‘Since working in the field of autism I have become more aware of those within the political sphere that are inclined to help us, and those that aren't. With this in mind, my vote will undoubtedly be affected by the party that makes healthcare and education of the public sector, particularly in relation to autism, a focal point of their manifesto. Support for the 'Billy's' of the UK will in turn, have my support.’  Natalie Williams, London, UK

‘My autistic grandson is the only one of my grandchildren that I worry about, the others are fine and will make their own way in this world, that’s part of life. I watch the desperation my daughter and son-in-law go through just to get his needs met. Autism has affected our whole family. I’m afraid to say that other issues are irrelevant to us now. Myself, my husband and other members of my family will vote for any leader that pledges real support for my grandson with autism.’ Sarah Goldhawk, Manchester, UK

‘I have strong feelings about the world and politics, but none more so than what happens to my son when I die. I will vote for any leader that puts into plan right now a serious solution to this serious problem.’ Janette Finch, mother of a child with autism, Worcestershire, UK

‘I was diagnosed with Aspergers at the age of 25 and throughout my life I have received no support from the NHS or any other government services. I have found that they are all aimed at the less able or those with mental health issues. My parents give me a dramatic amount of support and my concern is what I will do when they are not around and if I am unable to afford private help when I need it. If I knew that if support for the more able adults on the spectrum was part of a government plan it would influence my vote.’ Charlotte Stace, Sussex, UK

‘I would definitely vote for the party who pledge serious monetary commitment and properly well thought out policies to look after families who live with Autism. It appears to be the poor relative, underfunded and forgotten about. We slip through many of the cracks. We have to shout too loud in order to attain any services that our children (and adults) are entitled to. I have applied three times for a Blue Badge – I am still waiting to hear from my most recent application. Many people today are still ignorant of the condition and therefore do not appreciate the seriousness and how it affects sufferers' lives. And the carers are forgotten. I have had to give up a £26k job to live off £50 per week to look after my son. I am slowly sinking more and more into debt and can see no way out - which affects my own mental health through stress. It also means that I am unable to purchase any sensory items or therapy for my son, so I am failing him and he is not fulfilling his potential in life. Therefore as an adult he will not necessarily be able to make a positive contribution into society, all because we are failing him now and not giving him the therapy he needs to develop.’ S Huggett, UK

‘I would vote for any party that will take action on what has happened to kids that get autism…what can they do to help recover autistic children? How are they going to be looked after in the future? Most of all a pledge to look outside the standard pharmaceutical led stories, cover ups and lies, to fully look at vaccines impact (and not just the MMR – although the recent GMC trial was a mockery of our law!); mercury fillings; fluoride; aspartame; MSG; and all the other toxins that our families are told are safe for us.
Any party that would look at ‘true health’ and not just ‘sickness and a pharmaceutical pill for everything’ would get my vote (and probably those of everyone I know) – before this country is on its knees from being poisoned at all angles. What are we going to do if the autism rate creeps up? If and when it is 1 in 25 – or 1 in 10 – how, as a country, will we cope? Let alone get the support that is so desperately needed and deserved for these children and their families? I would love to know if any of the parties will be strong enough to speak up for the truth.’ Jo Barlow, UK 

‘I shall vote…For the party who says that they can help to make my life and my son’s life a lot better than it is.
A party that can stop the denial of what is a huge crime of human suffering for all our family.
A group that can recognise that to spend all week with your child, as you have to home teach, is not healthy for either of us.
A Party Leader that can do something to ensure that my son gets the health treatment he needs and deserves.
A Government that will not just give lip service to the support they purport to be giving.

I shall vote...
Only for a person that sees our pain and suffering, and truly wants to make a difference.
That recognises what we go through every hour, every day and wants to help in a real way.
Someone who appreciates that we are just trying to do right by our child.
A human being to share and sympathise in what can only be described as a living hell.
To show compassion for our suffering child in a world that is so cruel: to help change that!

I shall vote only…
FOR THE PARTY THAT RECOGNISES AUTISM!’By the mother of a 14 year old son with autism (who is doing her best and needs way more help than she is getting now – which is NO HELP AT ALL!)

‘The way things are today; you would have my vote with anything you do to help the situation!’ Tammie Night, UK

‘I just hope one of the major parties is willing to step up to the plate. If not, for the first time ever I am considering withholding my vote.’  Deborah Nash, UK

‘I no longer have faith in the present government, as in my opinion they are more interested in sweeping any problems under the carpet. I would support the party offering parents of vaccine-damaged children the opportunity to have their complaints studied by an independent panel of experts in that field.’  W Marchant, UK

‘I am the mother of 2 small boys, 4 years old and 18 months old. Our 4 year old son has ASD. Our main concern for the election is who will support services for those on the Autistic Spectrum and give parental choice for that support? Far and away this is the issue that will determine our vote in this election and the votes of the friends and family who have supported us in our journey.’  Belinda, London, UK

‘The list is exhaustive, it would be great if the government would first realise that although the MMR vaccine maybe be OK for a lot of children, for many it results in the complete lifestyle change and living with autism - but alas I don't hold up hope having worked in the pharmaceutical industry for 6 years prior to being mum.
For Autism:
1. Better education of health care practitioners and teachers etc. so that they are aware that one autism child experience does not mean the next child is going to be the same; greater understanding of the spectrum and expectations applicable to that particular child; more SENCo trained with at least NAS Earlybird training and not relying on third hand information!
2. Better provision in mainstream schools for children who are not statemented; more ABA techniques used; more assessment centres for autistic children - nurseries using autistic friendly methods getting children ready for learning using PECs, visuals etc. along with regular input from speech therapists and occupational health therapists for either mainstream or special schools depending on their abilities. I know of one such place in our area.
3. More dieticians who have experience and can advise on GF/CF diets.
4. More money for carers and to support the impact that autism has on families. This is so underestimated that many, like myself, give up any thought of returning to careers with so little support. Autism doesn't just affect the child it affects family, parents, siblings and extended family in every situation from diet, day to day, school and so on.
So in general I would ask for more recognition for autism and the impact it has. Better education on autistic behaviours would be start.’ Shazia Mir, mother of Mum Sara (4) and Ibrahim (3), who has ASD

‘I am responding to your request on Facebook about what parents would like to hear from politicians about autism. I would like to hear them say that first they will agree to stop cutting the funding for services.  If the recession is bad now just wait until these children become adults.  The cost of housing, feeding and clothing disabled adults is much worse then simply funding their early intervention.  Have some foresight and acknowledge that given the right interventions recovery is possible reducing the need for funding as adults.

Parents also need to be allowed to have more say on how these funds are spent.  ABA (applied behavioural analysis) therapy does not work for all children and there should be a more flexible attitude about allocating funds to other treatments that have been recognised as effective.  Parent education is very important and continuing to fund this and providing more opportunities for parents to choose the right therapies, will, I believe, save money in the long run. Currently these services are being cut all across the country. 

Health care reform: I am so sick of spending a ton of money on expensive medical insurance only to be denied coverage for effective treatments.  Again, foresight.  Foresight to acknowledge that if these young people receive effective treatments then they significantly reduce the chance of becoming a dependent adult.

Finally, parents need to be allowed to have a say on where the research funds should be allocated.  As you know there is no such thing as a genetic epidemic.  Genetics are linear and stay within that family line, they don't jump across the street to your neighbour; therefore, the plausibility that autism is a genetic disorder is getting smaller and smaller.  Funds into causation research need to move onto studying more environmental factors.  If politicians listened to what parents think the cause of their child's autism then I believe the research funding would be very different then it is currently.’ April Boden,mother of 2 sons: neurotypical 7 year old (had his vaccines spread out and delayed because of several illnesses) and 5 year old with autism (never sick, received all vaccines on time)Oak Park, California, US

‘I feel very strongly about what you are trying to do as I too have a son with autism. He is 4 years old and has only been diagnosed in the last 6 months. As I am sure you know, life as a family with an autistic child can be hard and there are times when I think “Why me?” But I look at my boy and he is so loving and caring and makes me see that I shouldn’t be thinking “Why me”. I would love to be able to see the world how he does so I can understand it a bit better for him. I worry how he will cope when he has grown up and left school. Will there be people who will help him like I do? I don’t know. So many people don’t understand at all, not even schools sometimes. People should be made aware, and the government should do more to help the people and kids like yours and mine.’ Sam Williams, mother of a child with autism, UK

‘In response to your request for opinions on voting; I would vote for any party that was prepared to be open-minded, flexible and remain uninfluenced by their commercial and quasi-political interests in their approach to autism and which was also prepared to confront and deal with the issue honestly and positively.’ Frank Honeybone, UK

‘As a mum to a son (10) and two daughters aged 9 and 3 all of whom have ASD I have no idea at the moment how I would vote. As you can imagine the last 10 years of my life have been spent fighting to get my children the services and education they need to thrive and be supported. To say it has been a struggle is an understatement and I have devoted my life to autism because I love my children. People ask me “How do I manage?” – “Because I have no choice” is the reply, and “Because this is the way it's always been.”
My children are all in specialist provision and attend a day school and the youngest is currently going through the system at the developmental nursery. 
Any political party that would help me would get my vote. It is such a struggle and I run a club for children and their families with ASDs, as we could not access regular clubs for our children. All of the parents there struggle to get the support for their children be it education, social work or access to benefits. Every time you apply for any sort of service or benefit you have to tell your story all over again and reduplicate the information. We don't have time for this. There should be a system that once you have registered your child’s details in a central database then you can update them as necessary but all the info professionals or authorities need would be accessible without you having to fill in yet another form.
I do not want to be pitied: I want help. I have none.
My husband and I are under so much strain. To try and get respite - well my children need consistency but you can't get the same person, never mind a social worker. The last one left and as our local disabilities team is two social workers short unless you are threatening to abandon your kids you are not a priority.
Despite the fact that the current PM and leader of the opposition have both had children with disabilities I bet they didn't have any problems getting services for them.
What is going to happen to my children in the future? My beautiful boy cannot read and has learning difficulties. My gorgeous eldest daughter cannot go upstairs in our house by herself, as she is so anxious. She barely communicates and retreats into herself as her brother is so loud and in your face. My precious baby girl stalks me around the house and cannot stand anyone touching her hair. What will become of them if I am not here? 
That is any parents biggest fear I know, but the politicians need to wake up and realise that if they don't put resources into place now then there is going to be a whole generation of autistic adults that will end up costing the government a lot of money.
Who knows what our children would be capable of achieving if they received the resources they so desperately need.
I know so many higher functioning children with ASDs who are so intelligent but have issues dealing with anger and struggle socially. With the right resources put in place now, this group of children could go on to be working and contribute to society.
So, I probably haven't answered your question very well and I am no clearer on how I would vote. A party that would show compassion and radically shake up the system is the answer but sadly they don't exist!’ Kirsty Heneghan, UK

 

Polly’s campaigning in 2009 met with spectacular success. Billboards were posted around London inviting Gordon Brown to call Polly (and he did). In parallel the iconic Autism Mothers poster was placed in motorway service stations the length and breadth of Britain, In WH Smith windows and across the internet accompanied by a short video showing how it all began. http://www.youtube.com/watch?v=sqiyND3RLW4

The video triggered a worldwide response from mothers of children with autism all over the world.

On Thursday 11th June Polly was invited to number 10 Downing St. to meet with Gordon Brown. There were many positive consequences of the meeting; Sarah Brown got involved by organising breakfast meetings at Downing Street for autism organisations to discuss the way forward; Polly joined the External Reference Group (ERG) which helped shape the adult autism strategy. Polly emphasises that this was just the beginning. Now as WAAD 2010 is almost upon us, the campaign is again stepping up a gear.

Polly will be working with the Autism Trust (www.theautismtrust.org.uk) and the Autism File magazine (of which she is Editor in Chief) to bring further awareness to world governments that autism is something that needs their attention NOW.

Here in the Election year. Please help Polly take her campaign to the heart of the UK General Election. Email your thoughts NOW to polly@autismfile.com