Monday 30 April 2012

PIP Consultation Response.

We asked our supporters for their input and late in the day we have got our PIP consultation response ready and submitted - phew! We specifically want to thank David, Susannah, Lee, Tim and Jean for all their hard work after joining our consultation group over on Facebook. Without their contribution it would have been impossible to get this together.

It isn't too late to submit a response, they will be accepted up until midnight tonight (30th Apr) If you have 5 minutes to spare, we would encourage supporters to copy and paste our response into an email, personalise (i.e remove all mention of Act Now For Autism as it's individual responses that count) and send to pip.assessment@dwp.gsi.gov.uk or please email Teresa who will send you an edited version you can use. 




Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. You can contact the administrator on mail@actnowforautism.co.uk
 
Here is our PIP consultation response, prepared in partnership with autistic adults and parent carers across the UK:

Q1 – What are your views on the latest draft Daily Living Activities?

§  Autism is an extremely complex condition. Everyone who has a diagnosis of autism will have impaired communication, socialisation and imagination (fixed and rigid thinking) no matter how verbally able they appear to be. These three impairments cannot be weighted or looked at separately because the 3 impairments join together to have an accumulative impact on the lives autistic adults. Therefore we firmly believe that there needs to be a descriptor for people who have an autistic spectrum condition/aspergers. Without a specific descriptor adults with the diagnosis of autism are once again being made to fit into a means of measuring their functionality by a system that was not designed to specifically measure the impact autism has on their lives.

§  Will the communication part of the descriptor encompass all forms of communication, including the inability to understand non-verbal communication and literal interpretation of both verbal and non-verbal communication? It is essential that it does.

Communicating effectively is perhaps the biggest issue for adults who have a diagnosis of autism. Autism is a spectrum condition and the communication styles and the need for communication aids can differ significantly from person to person.

Impaired communication and socialisation skills impact on every communication that an adult with autism has.

Act Now For Autism would like to be assured that all communication styles and preferences are accommodated during an assessment.

We would also like to be assured that the assessors will be fully and suitably trained in all of the different communication styles? It can often take a trained speech and language therapist to unpick both expressive and receptive language of someone with autism.

Adults with autism may appear to be very communicative but can often find question and answer discussions easier than having to use expressive language. Autism affects both receptive and expressive language.  Autistic adults should have an advocate with them throughout the assessment process as it may be extremely difficult or impossible for the adult to give accurate answers to the questions.

Some adults with autism do not fully understand how the condition impacts on their daily living. Therefore those adults who have verbal ability but lack an understanding of their own condition and how it impacts on their lives will be placed at a significant disadvantage, and may be at risk of losing a benefit that they are in fact entitled to. We would reiterate the need for an advocacy.
Effective communication requires understanding otherwise it serves no purpose. The inability to understand the implications of situations can be as incapacitating as being stuck in a wheel chair when you are trying to get down several flights of stairs.

Face to face assessments are going to be extremely difficult for adults with autism, and we believe that autistic adults will be significantly disadvantaged by this method of assessment. An adult who finds themselves in an environment which is alien to them, being asked questions by someone they are not familiar or comfortable with, may tell the assessor what they believe they want to hear to ensure that they can be removed from a situation that they are finding difficult as soon as possible. It is important to note that many verbal adults with autism have often learnt that by giving the answer which they believe might be expected of them, that it can often reduce the amount of answers they are expected to supply.

For example an adult with autism who does not fully understand their condition who is asked how well they think they can communicate with other people might respond ‘I communicate well’. The adult will have learnt that by giving what they consider to be a positive response to the question, using words included in the question is less likely to lead to an additional question therefore reducing the responses they have to provide.
An assessor asking adults with autism questions must also satisfy themselves that the adult has in fact understood the question. The ability to communicate effectively depends on many factors and will fluctuate depending on the levels of anxiety being experienced by the adult and other stresses including sensory issues.

For example stress and anxiety can impact on an adults ability to communicate if an adult is given too many commands or questions, they may in fact ‘zone out’.

Adults with autism experience processing problems when they have an overload of information. Having to answer a series of questions can impact on the ability to process the questions and then communicate effectively. Adults can then becoming hyper focused on trying to process a question and the knock on effect to that can impact on other areas of their functioning. 

Problems processing information can for example lead to an adult being late for appointments or even catching the wrong bus to attend an appointment because they are too preoccupied trying to process information.

We would like to stress that being able to access written communication does not mean that someone with autism can understand and then act on the information that they have accessed. People with autism often have a very uneven profile of skills. An ability to access written information does not mean ability to process and understand that information.

§  The socialisation part of the descriptor must also include the difficulties that adults on the autistic spectrum have because they do not understand non verbal communication and because they often have a literal interpretation. There needs to be clarification regarding the help that someone might need to help them to socialise and the score that will be awarded depending on the support needed.

Some adults with autism will only ever be able to socialise if they are in the company of a trusted person who they know well. It would be unfair if an adult with autism could only ever score 2 points on the rating scale because they can only ever socialise if someone they know well is with them. The person who accompanies that adult is a person who has an in depth knowledge and understanding of that adult and that should qualify as someone who has been trained or has experience. Meaning that the adult with autism should score 4 points on the rating scale.

Socialising can present an adult with autism with a number of internal stresses that they have to cope with in addition to the socialising. Again the ability to socialise can be affected by what is happening in the life of the adult at that moment in time. This is something that can fluctuate not only from day to day but from hour to hour.

Adults with autism often find it difficult to find or maintain social relationships and friendships. This can lead to unwillingness for them to even try to communicate with someone socially.

Any change to plans that have been made to socialise can impact on the adult with autism and sensory issues, such as lighting, music, and crowded place will all determine how successful the social communication will be.

Some adults are able to socialise either on a one to one basis or within a small group of people who they know well. Social interaction often has to be on the term of the person with autism which limits the experiences that will prove to be successful for them. 
Many adults have social scripts that are learned which they use in social situations. But often these scripts are practised and rehearsed and are meaningless to the adult in every other way than asking a serious of polite questions that they have programmed themselves to roll out in social situations. When the script comes to an end or the person who has been asked the polite question responds in a manner that they adult is not expecting, that can create anxiety leaving the adult with nowhere to go with the conversation. For some adults this can lead to frustration and aggression and they may then have a verbal outburst.

Adults with autism can often ‘stim’ when they are being socially overloaded and are finding the interaction too much for them.

For some adults with autism the ideal social life for them is to stay at home and not have to encounter or deal with social situations that are both alien and frightening to them. Many social activities even day to day activities that neurotypical people participate in make no sense and are unwelcome activities for people with autism.

§  Making financial decisions can be very hard for some people with autism. They can find money and its value confusing. Some adults with autism find it difficult to understand that they have to keep some of their money to pay for example a utility bill as they find it difficult to understand that heating and lighting costs money. For some adults the heat and light source is just there on tap freely for them. Some seldom think of the consequences of having the heating or lighting on all day and all night. The other side of this coin is that some adults worry so much about bills which they might have to pay that they tend not to use any heating and as little lighting as possible to enable them to keep their bills to a minimum. Budgeting can be a huge problem for adults with autism. The prices of food items change on a daily basis which can lead to confusion and frustration.

Communication and socialisation skills are a significant factor around financial issues. This can impact on the ability of the adult with autism to successfully handle their own finances. Adults experience huge difficulties if they have to contact their bank and have to follow a series of instruction before they can speak to a person. Some adults have to ring the telephone number a number of times to give them the time that they need to process each instruction. Speaking to the adviser at the other end of the phone presents its own problems. The adult with autism will often have prepared a script before trying to contact an adviser. If the adviser then tries to veer the adult away from their script this creates confusion and sometime frustration and the adult will then terminate the conversation without successfully having their query answered.

The following examples of how they find dealing with their finances were given to us by adults with autism who Act Now have got to know very well during the last two years.

‘I even have a scientific full-display calculator since if I can't see what I've worked out if there is a complex sum with money to work out, then I tend to stumble and not know how I came up with the result I've had even halfway through.’ In other words, if the way that a bill for example is worked out, then I cannot understand it very well (hidden language, charges, etc again)

‘Sometimes the way that a bill is worked out is too complicated and bitty (i.e. without saying "this includes VAT" in place of "Sub-total" "Total owed" "Total gained", etc - I need things in plain language’

‘The problem is that finances are variable according to what you have to pay, so it is easy to lose track or to add too much onto your expected payments, making it difficult to work out what you've spent, saved, etc’

‘I prefer for someone else to work through what I need to pay or buy as it’s just too much information to process by myself.’

· Q2 What are your views on the weightings and entitlement thresholds for the Daily Living activities?

§  Act Now For Autism believes the weighting system will not measure how severely a person’s disability affects them, just how severe their condition may appear to be from a practical perspective. If this is in fact the case then the net result will come down to how well a given assessor can pin point problems. This is a great concern to Act Now.

Weights by definition are designed to bias the data in a particular direction so that a pattern is exaggerated and thus more visible. So to achieve the right outcome for everyone who has a disability a different set of weights would be required for each type of condition.

There seems to be an assumption that by aggregating the entitlement thresholds for the benefit at a higher level it will simplify the system and thus make it more effective and cheaper to run. Although we are told that each person will be assessed on personal need, it would appear to us that the method is designed statistically to do the opposite.

Each activity is given a weighting which results in an overall score for each person. Our impression is that these weightings are fixed, that is they are by implication giving priority to particular needs.

Our key concern is that the way in which a particular activity will impact on someones life will depend on their own set of difficulties i.e. one person’s communication issues could significantly impact on their daily living just as significantly as another's physical immobility issue would impact on their daily living.

To reflect things more realistically you would need to vary the weighting system based on an individual’s ability to function rather the thing that actually inhibits them. The weighting system will not measure how severely a person’s issues affect them, just how severe the condition may appear to be from a practical perspective.

The adults with autism who have helped with our response feel that reconstruction of the weighting is required. They feel that the weighting should be based on overall lifestyle impact, by looking at all areas involved.

All autistic people are entirely individual; therefore their needs and difficulties are going to be unique to them that should be accounted for in the process of assessment and the weighting for Personal Independent Payment.

Q3 – What are your views on the latest draft Mobility activities?

§  Case study 13 looks at Tom. He has qualified for enhanced mobility due to his inability to plan a journey without support. We would agree with the decision however Tom has no road safety awareness. People with autism often have no sense of danger either for their own safety or that of others. We would like to see a descriptor with an equal weighting attached for adults with autism who have a limited or no sense of danger?

§  We would also like to see an additional descriptor allocated with a weighting of a minimum of 12 for people with autism who suffer from anxiety and sensory processing difficulties, who could make a journey with the right transport / support put in place. Without that support or their own familiar vehicle, they may become isolated.

People with autism often have very high levels of anxiety and stress and we know this impacts on their mobility.

Q4 – What are your views on the weightings and entitlement thresholds for the Mobility activities?

The weighting system will not measure how severely a person’s disability affects them, just how severe their condition may appear to be from a practical perspective. The net result will come down to how well a given assessor can pin point problems. 

Weights by definition are designed to bias the data in a particular direction so that a pattern is exaggerated and thus more visible. So to achieve the right outcome for everyone who has a disability a different set of weights would be required for each type of condition.

· Q5 – What are your views on how the regulations work regarding benefit entitlement?

We do not feel that we are able to answer this question because we lack the legal knowledge required to make a meaningful response.

Q6 – What are your views on how we are dealing with fluctuating conditions?

§  A fluctuating condition is just that. We are not sure that it is right to measure a fluctuating condition over the period of a year. We are not sure that there is a suitable timescale with which you could accurately measure a fluctuating condition.

§  If the person has a fluctuating condition, then 3 or 4 descriptors may also be involved. Allowing the use of more than one descriptor would surely show how the fluctuating condition impacts on their life. It would also show the accumulative effect that the condition has on their lives. If a person is having difficulties in 3 or 4 areas of their lives then there must be a way to measure the accumulative effect that this has on the person’s life.

Act Now believes that this is an important issue which will need addressing before the PIP assessment goes live.

Q7 – What are your views on the definitions of safely‘, timely‘,
repeatedly‘ and in a timely‘ manner?

§  For an adult with autism any of the words being used safely‘, timely‘, repeatedly‘ and in a timely‘ manner will be dependent on a number of factors and this can fluctuate from hour to hour as opposed to day to day.

§  Sensory issues can impact hugely on the ability of an adult with autism to function well and carry out basic tasks.  If someone with autism is experiencing a high level of anxiety, this will impact on their ability to function well throughout the day. Something as simple as the hum from a light bulb can affect the functioning ability of someone with autism. This would mean that simple tasks would take them much longer to carry out and in some cases it would make it impossible for them to carry the tasks out at all.

It is important to be aware that adults with autism often have non transferable skills. This means that although they might be able to do something safely, timely and repeatedly at home and in a timely manner it does not mean that they can transfer those skills to another setting. This would include being in the home of a parent, carer of anyone else whom they knew well. 

§  Act Now would like to know what the DWPs definition of doing something safely means? Does this include the emotional well being of the adult as well as physical injury? 

It is vitally important that the definitions of these words are understandable by those who will be assessing adults with disabilities and also by the adult themselves. Words that can be interpreted in many different ways by different people are not helpful and are likely to lead to confusion and differences in the scoring that will take place during the assessment. 

Act Now would not like to see these words included in the legally binding rules for PIP until it is made clear what the definitions of these words is going to be.


Q8 – What are your views on the definitions in the regulations?

§  All of the words within the PIP regulations need to be clearly defined with a shared meaning for everyone who reads them.

At the moment many of the definitions are vague and woolly and are open to interpretation. This is unacceptable when a person with a disability stands to lose their benefit if they are being measured by a scale that is understood differently by different people.

For example we understand that “assistance “means physical intervention by another person. 

The dictionary definition of the word assistance is ‘help’ aid’ ‘support’ it is possible to help, aid and support someone without physical intervention. In fact adults with autism who require a great deal of assistance during their day may not respond well to physical intervention. Sensory issues mean that some adults would become distressed, anxious, or physically aggressive themselves if the assistance there were given was by means of physical intervention.

“communicate” means convey and understand information in the claimant’s native language. It could be argued that autism is the first language for adults with autism. Unlike people who learned a different language and eventually master that language people with autism will always struggle, even with their native language.

communication support” means either support from a person trained to communicate with people with specific communication needs or support from someone experienced in communicating with the claimant.

It also needs to be accepted that someone who appears to be highly verbal can in fact have complex communication needs and this will need to be embedded into the training that all of the assessors receive.

Will the assessors break these definitions down and use simple language when they are asking the questions. i.e. can you comb or brush your hair, wash your own hair, clean your own teeth.
“groom” means (a) comb or brush one’s hair; (b) wash one’s hair; and (c) clean one’s teeth;

Q9 – Do you have any other comments on the draft regulations?

The issue of providing information about their condition is one of the biggest concerns for the adults who have spoken to Act Now.

It is vitally important that the DWP are not only aware but accept that there are a significant number of adults who will not be able to produce any information from a professional who is deemed to be an acceptable source about their condition and how it impacts on their lives.

Act Now for Autism is very concerned about the importance of ‘supportive evidence’ for the PIP assessment.

Without supportive evidence autistic adults stand to lose their benefits. 

We know there are a significant number of autistic adults and those with Aspergers Syndrome who do not have the supportive evidence they are going to need for either assessment.

We believe this is one of the biggest issues that autistic adults and the autism community across the UK are now facing.
There are concerns being raised about how evidence will be gathered and by whom.

We believe the more important issue is what will happen to the significant number of autistic adults who will not have any evidence to gather?

Having no evidence to gather will be used against our adults.
In 2009 the National Audit Office published a report Supporting people With Autism Through Adulthood:
"Around 200,000 adults with autism do not have a learning disability. This group often fails to secure appropriate support, as health and social care services are traditionally configured for people with a learning disability, a physical illness or disability, or a mental health problem (which autism is not)."
"Three quarters of local authorities said adults with autism who do not meet eligibility criteria experience or report difficulties accessing the services they require. Almost two thirds felt that current services for adults with autism are limited."

Three quarters of autistic adults and those with Aspergers Syndrome did not meet the eligibility criteria to access the services they required in 2009. There has been very little progress made to extend service provision for these adults since 2009 so where they get the supportive evidence they need?

Without Health and Social Care provision, autistic adults are left with only their GP's to oversee their care needs. Evidence from GP's will not be considered as supportive evidence as part of a benefit assessment/reassessment, Chris Grayling told us that.

Face to face assessment is yet another big concern for Act Now and the autism community and yet it is highly likely that any adult who cannot produce information about their condition will most certainly be required to have a face to face assessment.

Will a lack of written evidence from professionals who have been deemed suitable to supply evidence, be seen as an indication that the adult with autism is not as affected by their condition as they might be. 

It must be understood and accepted that a lack of written evidence does not mean that an adult is not insufficiently affected by their condition that they do not warrant any services, provisions or support. It simply means that there were or is no services, provision or support available to that adult. 

Adults with autism are going to find face to face assessment particularly difficult to cope with. As the core impairments of autism cover the two most important skills required when a face to face assessment is undertaken, communication and socialisation, it cannot be stressed enough just how difficult these face to face assessments are going to be for adults with autism.

People with autism struggle to cope when they are in an unfamiliar environment with people who are unfamiliar with them. The pressures of answering question in an alien environment to them with the questions being asked by people who they are not familiar or comfortable with is going to be enormous.

Act Now is already being contacted by adults with autism who are already extremely anxious at the prospect of a face to face Personal Independence Payment assessment. Some adults with autism have told us that they would rather not have the benefit if it means they have to be asked questions they will not understand by people who they do not know and who do not understand them.

This is seriously concerning Act Now as adults with autism are amongst some of the most vulnerable adults in the UK. Without this benefit many of them will no longer be able to cope or pay for the things that enable them to have the support that they require in their day to day lives.

While face to face assessments in the home might lessen the intense anxiety that adults are already experiencing about these assessments it is essential that anyone who assessors an adult with autism must have an in depth knowledge and understanding of the condition.

Act Now does not see how it is possible to accurately assess someone with autism without including the diagnosis of autism in with the assessment.
We firmly believe that developing a system that will consider the impact of impairments rather than what the impairments are - will not allow for an accurate assessment of someone with autism. 

We are also very concerned that this system of assessment will only allow for the primary descriptor to determine the score given for each activity. We believe that rather than picking the most prominent descriptor(s) they need to factor in all descriptors simultaneously where each descriptor is valued according to what is deemed as a suitable level of support. This is the best way to make the result fair and balanced.

Other Comments:
Act Now continues to be concerned about the descriptors and how they will be applied when assessing someone with autism. Autism is a broad spectrum condition that includes many different co morbidity's, sensory issues and processing problems. We do not believe that it will be possible to accurately assess someone with autism without the vastness of their condition being taken into account. 

We are greatly concerned that without being able to reflect the amount of difficulties that someone with autism will suffer from because of social and environmental factors, that adults with autism will be placed at a significant disadvantage to other adults with disabilities when being assessed for PIP. Especially as adults with autism have a condition that impacts on both communication and socialisation.

Act Now is also very concerned that although someone may have more than one disability, (people with autism often have co-morbidity's that run alongside with and impact and interact with their autism) when scoring the assessment only one descriptor will be used to score an activity. What will happen if the person shows an equal amount of difficulty performing an activity in two or more of the descriptors? It is entirely unfair to then choose only one descriptor with which to score them. We feel that this can in no way reflect the level of overall difficult that the person is experiencing in reality. It is in fact minimising the impact that the problems that that person experiences in their daily living.

The final descriptors must reflect the complex nature and the magnitude of autism. We do not feel that at the moment they do. It is important that ultimately any assessment which will decide the level of benefit that someone with autism is entitled to is fit for purpose when as assessment of that person is carried out.

For and on behalf of Act Now For Autism



Saturday 28 April 2012

My Life With Autism - Video 2

Act Now For Autism

To mark the end of Autism Awareness Month we are continuing our My Life With Autism series with 3 videos. All feature Douglas as he and his mum, who conducts an interview with Douglas, discuss day-to-day life and how autism impacts on him. 

We are so very grateful to Douglas and his family for sharing this intimate and insightful piece - here is part 2:

Wednesday 25 April 2012

My Life With Autism - Video 1

Act Now For Autism 

To mark the end of Autism Awareness Month we are continuing our My Life With Autism series with 3 videos. All feature Douglas as he and his mum, who conducts an interview with Douglas, discuss day-to-day life and how autism impacts on him. 

We are so very grateful to Douglas and his family for sharing this intimate and insightful piece - here is part 1: 



Sunday 22 April 2012

My Life With Autism.

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs - below Cara gives us a great insight into what a typical day is like for her as a parent of an autistic daughter: 

"Here goes, a typical day:

Morning usually begins with a struggle to get R down the stairs, she has no sense of danger so will swing holding my hand and try and jump, how we haven't been injured yet I don't know. Into the living room, she heads for 'her corner' looking for her juice. It has to be in her avent baby bottle, measured out at 9 mls or else she will throw it at me, then toast, which is always examined and sniffed before eaten.

(Weekends are a nightmare for getting her dressed, she only likes to wear school clothes as this is what she wears 5 days a week so getting her to understand that weekends are different is a losing battle, so its always a compromise, black straight leg bottoms and a t shirt, no pretty girly things for her she won't tolerate it, even went to a wedding reception with pj's on because we don't get undressed at night to wear other clothes)

On school days we leave it as late as possible to dress her as she doesn't do waiting so its a perfectly timed routine and if transport is late we have major anxieties and meltdown so every morning I am anxious till her transport arrives...

Home time: again juice has to be ready, its the first thing she looks for, then the battle to get her school clothes off and put her all in one zip up the back sleepsuit on so she doesn't play in her poo and smear, we have had a good few incidents.

Now for dinner... PASTA, RED PASTA, PIZZA, RED PIZZA, SAUGAGES WITH RED SAUCE, see the pattern emerging?! Red food, and if its not red food then tomato sauce is a lifesaver!

Bedtime routine: bath, always a struggle to get her into it, she loves her bath once in it but hates to be dry then feel wet, sensory I guess. Once in she's a wee fish, head under water, lots of interaction and giggling, then the same process to get her out of the bath, she hates to feel wet and have to be dried so it takes 2 of us to prize her out the bath. Once dried its almost bedtime, melatonin next then the mad half hour of running, screaming, spinning bouncing...then eventually she will say one of her few words "BED".

She knows herself when she's tired, so now the nightshift begins. As she is a danger to herself I have to sleep in with her, she will wake at least twice through the night, most nights she won't sleep past 3-4 am.

Then there's her smile and all the things she achieves, the small things most wouldn't even notice their kids doing, the beautiful sound of her little voice the twinkle in her cheeky wee eyes and the way she learns and works things out, she is just the most fascinating wee girl I have ever met, and she's mine."

Tuesday 17 April 2012

My Life With Autism

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs - below is Debbie's powerful and moving account of her experience as a parent: 

"The A-Word

I never thought I'd be sitting here on a Saturday night, in 2012, writing a wee story about autism.

Lets go back 10 years: It's spring 2002 and I am pregnant with my second child. My daughter, Beth, is 15 months old and has recently had her first MMR jab. That I guess is when the word autism dawned on my consciousness for the first time. I've agonised over this vaccination, read stuff, not really understood the science. I've gone ahead with it, kept a very close eye on her, panicked when her behaviour seemed to take a nose-dive in the days following the injection. But Beth's fine – she's a bright, happy communicative wee girl. I needn't have worried. So autism can disappear from my mind again.

Now it's autumn of 2003: My youngest child, Matthew, is 15 months old. It's time for his MMR. The A-word may flicker through my mind briefly – I don't remember. Beth was fine, Matthew will be fine too. But Matthew has always been very different from his sister. I have felt a little uneasy about him since he was around 6 months. He's too quiet, he's undemanding and appears to have no desire to communicate. He is a bad sleeper. He can become distraught when taken to strange places. But boys are slower than girls. Beth was a quick developer and I'm expecting too much of Matthew. So my health visitor tells me and so I convince myself, every time I voice my concerns.

Summer 2004: Matthew has his 2 year check. I go to the appointment ready to insist that there is a problem. I don't need to, as the health visitor can see it for herself. I daren't ask what could be wrong – I can't make myself think about it. My head is cotton wool, my stomach is full of rocks.

So we take Matthew to see the GP in order for a referral to be made. I tentatively ask what could be the problem and that is when the word autism comes into my life again. For good. My head is spinning – the next few weeks and months are a blur of denial, panic, the word autism running through my head. In those days hearing, seeing or thinking that word was like a stab in the heart, a clawing at my guts.

We go through the diagnosis process, support groups are suggested. But why would I go to something like that?

Denial is my main motivator for several years. We eventually receive a diagnosis when Matthew is four. At this stage he is at mainstream nursery with 1 to 1 support and also attending a special needs playgroup, we have input from speech therapy, we apply for a place at a local special school and are thinking about asking for assistance from social work.

Yes we are in the system, but largely, in my own mind, I am still going through the motions. I can say the autism word, but somewhere deep down, I don't believe it. Not really. This won't last. Meantime I can't think ahead as far as tomorrow. I don't know it, but my mental health is deteriorating. I am becoming very unwell.

Summer 2008: Matthew has completed one year at school. It is now the holidays. He is unwell and when I have to take him to the GP I become so stressed that I burst into tears. Up until now my tears have mainly been private. Daily, but unseen. The doctor tells me I must come back and see him myself. Of course I am ill. I have depression, though I hadn't been aware. I have kept it in for years. I have said the word autism, I have used it to describe Matthew, but I haven't believed it.

So I get treatment. We begin to get some help from social services. I start to feel better, gradually.

Fast forward to 2010: I am doing better. I join some groups on Facebook. I force myself along to a local support group, I speak to people. It is the best thing I have done in years. I make new friends, build up a support network of people who understand, get on with life.

So in 2012 I can say the word autism. I can write about it. I can laugh about it. I can cry about it. But not very often. And it is just a word. Six letters.

Of course these last 10 years haven't been all about me. They haven't all been about autism. Life can be hard. It can be good. It can just be. But I can say now that Matthew has autism. I won't cry, and I wont be saying one thing but really believing something else.

Acceptance has not come easily or quickly for me, but it has come."

Sunday 15 April 2012

My Life With Autism

Act Now For Autism

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs with 4 more accounts written by parents of autistic children - we are very grateful to all the families concerned.

Lynne's story: 

"2002 was to be an eventful year for me. In March that year I was 7 weeks pregnant with my 2nd child when after a series of infections, I was struck by a pain I've never felt the like of before, along with the inability to move. After a few weeks it was gone only to return 3 months after Rory was born that September. Many, many months later, I discovered this was the start of my own disability - arthritis.

Rory was born by c-section, looking healthy, except for his feet. They were curled up and and wrapped back around his own legs, something I'd never seen before. But we did the physio...they slowly improved.

Rory's wasn't feeding properly - he practically choked every time I fed him...midwives thought I was overreacting till they saw it for themselves. Still nothing was done, no one was interested, so I supported him through it. Both of these things were due to benign congenital hypotonia. It took me till march 2004 when Rory was 18months old, to get them to listen and to get that diagnosis. Kevin, Rory and myself sat in front of a panel of 'professionals' at the local hospital as they dismissed my concerns, and told me that his eye contact and interaction was fine " he'll never be an athlete, but he will be fine by the time he is 5. It's benign, congenital hypotonia, nothing else". Its amazing what they 'knew' after seeing him for only 20minutes. Kevin was relieved at the reassurance from them, but I never believed they were right, much as I wanted it to be true.

Rory slowly met most of his milestones late, but he met them all bar one. He was a happy, chatty wee boy. He adored his sister, loved to sing, play, learn, dress up in her clothes, walk around with her hairband on, carrying her handbag, pretending to chat to someone on his toy phone. Play tea parties with his teddies on a picnic mat in the garden...

In 2005 he started mainstream playgroup. I remember he loved his wee friend that he made and played with him, gave him hugs, shared things with him. It was during these next few months Rorys speech started to lessen and his eye contact all but disappeared. He couldn't cope at playgroup and became scared of the other children. Eventually on one of the days I was at playgroup helping out and saw him screaming, scared if another child came near him, walking round the edge of the room trailing his hands on the wall, picking up chalk and eating it, I made the decision to take him out of playgroup.

I worked so hard with him at home but couldn't reach him and watched all the things he'd learned, the love he had for life, disappear before us.

I researched every night once he'd gone to sleep until I found a website with a checklist of all the symptoms Rory had. I ticked them off one by one. I remember the empty feeling in my gut, it felt like the child I knew had died and I was grieving.

I knew autism had taken our son. And we had to watch the process of him slowly disappear in front of us no matter what we tried. It took from that time until July 2006 to get the diagnosis that by this point we so both wanted and dreaded - Rory has autism."


Monday 9 April 2012

There Is An Elephant In The Room.



Adults with autism have left Act Now For Autism in no doubt as to how terrifying the idea (and reality) of having a Work Capability Assessment is. People are currently being migrated from Incapacity Benefit to Employment Support Allowance and generally are worrying themselves sick about the prospect of having a WCA.

To compound this, from April 2013 we will see PIP rolled out in place of DLA. Every adult who currently receives DLA will face an assessment and then have to wait for a decision about what level of PIP they will be awarded.

Act Now for Autism is very concerned about the importance of ‘supportive evidence’ for the WCA, and it would seem the DWP are going to require ‘supportive evidence’ as part of the PIP assessment too.

Without supportive evidence autistic adults stand to lose their benefits.

We know there are a significant number of autistic adults and those with Aspergers Syndrome who do not have the supportive evidence they are going to need for either assessment.

We believe this is one of the biggest issues that autistic adults and the autism community across the UK face and yet we appear to be alone with our concerns. No-one else is raising this nationally - we really are puzzled as to why.

There are concerns being raised about how evidence will be gathered and by whom, there are attempts to take it to judicial review. We believe the more important issue is what will happen to the significant number of autistic adults who will not have any evidence to gather?

Having no evidence to gather will be used against our adults.

In 2009 the National Audit Office published a report  Supporting people With Autism Through Adulthood:

"Around 200,000 adults with autism do not have a learning disability. This group often fails to secure appropriate support, as health and social care services are traditionally configured for people with a learning disability, a physical illness or disability, or a mental health problem (which autism is not)."
 
"Three quarters of local authorities said adults with autism who do not meet eligibility criteria experience or report difficulties accessing the services they require. Almost two thirds felt that current services for adults with autism are limited."

Three quarters of autistic adults and those with Aspergers Syndrome did not meet the eligibility criteria to access the services they required in 2009. There has been very little progress made to extend service provision for these adults since 2009 so where they get the supportive evidence they need?

Without Health and Social Care provision, autistic adults are left with only their GP's to oversee their care needs. Evidence from GP's will not be considered as supportive evidence as part of a benefit assessment/reassessment, Chris Grayling told us that.


There is an elephant in the room and the wrong strategy is being used to try to avert the consequences of it being there. What's more, the issue of 'supportive evidence' is going to catch out not just autistic adults and their families but others with hidden disability who don't require specialist input or care as well.

The Government want to cut/save 20% off the disability benefit cost. 

Potentially up to 200,000 autistic adults without supportive evidence are going to give them a good head start. 

Friday 6 April 2012

Happy Easter!


All of us at Act Now For Autism wish you a happy Easter and we hope you enjoy your weekend, whatever you have planned.

It can be a difficult time given the change in routines, shop hours being different, services closing down for the holiday, etc. so be kind to yourselves and perhaps indulge in a little piece of chocolate!

Don't forget to check out our new website - we are looking for our supporters to tell us about great services/charities in their area for the new pages we are currently working on. We'd like to create a directory of services across the UK.

You can get in touch via mail@actnowforautism.co.uk, leave a comment for us on Facebook or contact us through our website here.

HAPPY EASTER!

Tuesday 3 April 2012

Act Now For Autism - PIP Consultation Group.

Act Now For Autism - Pip Consultation Group.


The second draft of the assessment criteria for PIP (replacing DLA) consultation is due in by the 30th April.

Act Now For Autism will be submitting a response and would like your input - we have created a group on Facebook where we have split the consultation into manageable parts.

Please join this group and take part. We will then create a consultation response, which you can then copy, personalise and submit as individuals.

It's individual responses and the quantity of them that count!

Please get involved - the autism community across the UK is counting on all of us to try to make this assessment fit for purpose:

Act Now For Autism - Pip Consultation Group. 

Thank you.

Monday 2 April 2012

World Autism Awareness Day 2012

 Act Now For Autism.

We are delighted to share our latest campaign video, released today on our 
You Tube channel and new website to mark World Autism Awareness Day. 

Once again, some of our supporters have given us a snapshot 
of their lives and continue to be the voice of Act Now For Autism

We are very grateful to all who contributed. Without your words we couldn't 
have made this and couldn't continue to successfully campaign across the UK. 

More stories from some of our 12,000+ supporters across the UK will be 
published here and on our website over the rest of Autism Awareness Month. 


Sunday 1 April 2012

Check Out Our New Website!

Act Now For Autism:


Known to you all as ACT NOW (Autism Campaigners Together), we are delighted to announce the launch of our new name, logo and website on World Autism Awareness Day and during Autism Awareness Month!

We remain committed and passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. 

 
Act Now For Autism will continue to campaign against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. We are ardently campaigning for advocacy to be offered to anyone with a diagnosis of autism who has to attend a benefit assessment.

If you haven't already, please join your regional group on Facebook. Our groups are a safe place to chat and share information about what's happening in your area, to you or services and provision. 

Please check our our new website (actnowforautism.co.uk) and join our new mailing list, we hope to send to regular bulletins.  

Act Now For Autism Core Group.