Great work by AAN Ambassador Akib in Birmingham

Akib Qadir from Birmingham has been getting involved with what's happening in his home city. Over the past few months he has met with Birmingham's autism lead and has been writing a report on his personal experiences of diagnosis and trying to access support
 

At their meeting this month the Birmingham Autism Partnership Board discussed his report and the recommendations for change that he proposed. They are going to use this to strengthen and improve the local strategy that they are now drafting. They have also invited Akib to play a leading role in the public consultation they will be carrying out on their local strategy in the new year.

Akib has also now approach by a member of the National Programme Board who is keen to hold a similar discussion on his report at a national level.

Commenting on his success with the Partnership Board, Akib said "It's really good to be involved in the heart of the decision making process as no decision about autism must be made with out us."

Autism and Las Vegas Don’t Mix

We have three children, very typical in all ways to children of their age but with some particular characteristics.

Our 13 year old son is diagnosed with Aspergers and manages daily life very well, his high anxiety having disappeared since starting a very structured and organised school. Our 8 year old, the happiest of children, just needs some gentle reminding to not still run across roads and to ‘stop, think, move around the object you’re just about to fall over and then go, go go’!

But it’s our 9 year old daughter that has the greatest difficulties. She has a developmental profile that is difficult to neatly shoehorn into a definitive diagnosis. She is described as having tactile defensiveness, sensory processing difficulties, perfectionism, obsessionality, extreme reactions, distractibility and a sense of social frustration. We’re told her behaviours and emotional responses fall within the range for oppositional behaviour, inattention and on the overall Attention Deficit Hyperactivity Disorder index but she’s too perfectionist to be considered for an inattentive ADHD condition and that while her rigid patterns of behaviour and sensory processing difficulties could be considered traits of an autistic spectrum condition she does not fulfil the criteria for Asperger Syndrome.

Going anywhere together as a family of five is never, ever easy or relaxing. So I was somewhat open mouthed and disbelieving when my husband suggested we should take the children on a 17 day road trip around the hottest parts of the USA in one car, together, and mostly share the same motel room. He thought it would be a fantastic experience before our son disappears into the teenage angst of being seen out with his parents and so I agreed with a large amount of trepidation and with the insane belief it would all be ok because it was a ‘holiday’ and families are meant to have fun and relax and love being with each other on ‘holiday’.

Driving around Utah, Colorado and Arizona was indeed a once in a life time chance to see some of the most beautiful places on earth and it was full on and fun but it was not relaxing and although we all love each other to a degree no one could ever understand or dream of, sadly we don’t like being together as a family as it’s so rare that we genuinely get a moment to relax and enjoy each other and it’s heartbreaking to admit it.

Here are the pitfalls and tips we bizarrely hadn’t considered before we left hoping we could - for one time only – be like The Waltons. But then what family goes on holiday and doesn’t come back needing therapy.

Pitfalls – What Didn’t Work

1. The accommodation. It’s really hard to find accommodation for more than 4 people and we often had to share a large motel room with two double beds and a pull out. We should have anticipated the obvious problem with this but didn’t think it through and got upset with ourselves wondering why our expectation of being able to bunk down together didn’t work. Our daughter with sensory processing problems announced on day one that she would not under any circumstances be able to share a bed with her sister or even us ‘as you’ll all crease the sheets’ and then all the other things she couldn’t do such as share the few remaining clean t-shirts with her sister (having touched someone else in the past), allow anyone to put anything down or near the bed she wanted to occupy or touch anything she may have placed in the often cabin fever small motel room. On the few nights we had adjoining rooms my husband and I were often joined by the other children at different points in the night who couldn’t stand the ‘order regime’ imposed on them by their sister.

2. Eating out. Going to restaurants particularly for breakfast is what I consider being on holiday, only when having a good cup of coffee can I relax and face the day. On day one our daughter had a shut down in the first place we tried eat in and it went down hill from there. Nothing was ‘right’ in any restaurant we entered over a 17 day period as our daughter finds it almost impossible to feel comfortable in new places with the mix of people, sounds and smells and before her senses have time to adjust she panics and thinks she can’t cope, runs out, melts down or shuts down (head on table, goes rigid). Hungry, tired and beginning to realise we weren’t going to get any kind of food that didn’t exist outside of a drive thru we weren’t coping either. I don’t think over the entire holiday we actually made it to the end of a meal together as one of us had to take one or two children and leave before the end. 3. Going to any kind of new or busy venues. For some reason, the stupidity of it still surprises me, we decided to go into Las Vegas on not one but two evenings as it was our final stopover before flying home. I can’t quite understand the fascination with a place so devoid of charm but felt we should at least see it. The first night was not a pleasant experience for our daughter but we got away with it, the second night was a disaster. Having taken a taxi to ‘The Strip’ the sheer unbearable bombardment of noise, lights, people and endless stimulation made her feel sick and faint, she sat on the floor with her head covered and the evening was over as I carried her to find a taxi to go straight back to the hotel. We spent most of the end of the holiday going separately to different places depending on what the children could process.

4. Autistic meltdowns and nose bleeds. Sadly but not unsurprisingly our daughter had a number of meltdowns from the stress of trying to keep it all together with all these new experiences. Probably due to the heat, dry air and attitude she had a number of particularly scary nose bleeds. She’s always been susceptible to them but the pressure she puts herself under with the sheer expulsion of emotion was truly horrifying. Apart from ensuring she’s not in physical damager there is very little we can seem to do to help her ‘come back’ or ‘come down’ but not being on home territory and with people listening in the rooms next door, put a huge amount of stress on us all. At one point she had such a violent nose bleed that the blood covered most of a bathroom including a pile of white towels on which she had passed out/fallen asleep on the bathroom floor from sheer exhaustion. We had waited for her to fall asleep as would not have been able to hold her if awake for aggravating her skin further, before carrying her into our bed while I stayed awake to ensure she didn’t bleed again in the night. We then carry on as normal until the next incident.

Tips - What Worked

1. Our son with Aspergers took enough books to read one a day and his music to zone out everywhere he went. We’ve stopped aiming for ‘manners’ and let him read/listen to music if we could eat out and were amazed he would sit for periods of time in the few places we could get our daughter to sit in because he only eats ‘his food’ not everyone else’s kind of food but thankfully the diet coke was endless and everywhere served the only thing he would eat - plain bread or thin cut French Fries. We snuck in a carrot and celery having made detours to find supermarkets that sell the few ingredients he will eat and he was happy ignoring everyone in his own world. He’s a very goal orientated child who decided on ‘a mission’ at the start of the trip, to collect book marks of every town we stayed at and this fine balance of being free to zone out, motels with swimming pools, diet coke, dry bread and book marks kept him happy.

2. A really large car. We managed to space the children out physically so nothing was touching them to set them off.

3. Individual DS players so the three children could ‘zone out’ in the car in their own worlds. Seems obvious but my husband commented ‘why is it that it’s like they’ve had Valium when we’re in the car and the moment we open the doors its meltdown’.

4. ‘Adventure Time’. This brilliant children’s cartoon was on every half hour and was a great distraction and diffusion.

5. On the upside our daughter started to talk about ‘my autistic behaviour’ for the first time. She made some suggestions of what might work for her in being able to go into a restaurant and after a number of stressful trials and errors (at one point me husband had to leave and sit in the car as was so stressed by it all) we came up with a plan whereby our daughter and her dad would enter the café first and take their seats (at a table without any chair behind it so not as to touch our daughter’s chair). The rest of us were then to take seats facing and adjoining her. This often resulted in two or more moves within any venue, sometimes not even bothering to consult any more with staff for the sheer exhaustion of it all and after a glass of wine we were able to ignore the people now watching the entertaining Brits moving around the restaurant.

For all the difficulties holidays like this are wonderful. Seeing our children pick wild raspberries for the chipmunks, play hide and seek in million year old Canyons and roast marshmallows on an open pit fire in Colorado and then fall asleep under the stars was truly amazing. The tough bits were trying to find some space in any 24 hours to spend with your partner and not having to split up as a family in the day or night because one or other child can’t go out for food or can’t share a bed because it just took an hour for her to iron out the creases or take an hour to organise their travel bag so you can’t go to the pool as have to wait for perfection to be completed by which time your husband has taken the other children on a trip somewhere else. It’s a family holiday but one that involves most members having to do things separately. Maybe that’s not such a bad thing but when you’ve been desperate for the company of ‘family’- of some quality time with your husband and just some chilled out time with your children it can be a really lonely experience being together but not sharing each other’s worlds.

Paula Donovan

Raising awareness of autism, one story at a time

Ever wanted to tell the world about your experiences with autism? AAN Ambassador Helen Kelly explains why she started her blog, mumwithoutportfolio, and what she hopes to achieve through sharing her family's story:

I started writing my blog mumwithoutportfolio in July 2011, two months after my youngest daughter Emily was diagnosed as being on the Autistic Spectrum. There were a number of reasons why I decided to write this originally it was because I felt very alone and left to understand what it all meant for my daughter and our family but I also wanted to raise awareness about Autism and what it is like trying to see the light through the tunnel. I was very surprised by peoples reaction to my daughters diagnosis which ranged from well she doesn’t look like she’s autistic to she’s not autistic she just needs to learn. It was the drive to try and change people’s opinion of children on the Autistic Spectrum that spurred me on to write my blog because I am very much of the opinion that education brings awareness.

Topics I have covered throughout my blog posts have included shopping, school, friends and the death of my dad due to lung cancer. Although the posts haven’t always been upbeat they are always a true reflection of life and honest.

I have help pages on my blog which provide a bit of information and also directs people to the NAS website this is because I would not like to give anyone the wrong information as I am not an expert in Autism but I am an expert in how autism affects my daughter and my family.

I have received comments from people who I don’t know supporting me and have recently set up a Facebook page for the blog. I also tweet my blog page under the hash tag Autism awareness and I have met many people through this.

I would encourage other ambassadors to plunge into writing a blog, it’s free you can do it when you want to and most importantly you get to raise awareness and educate people.

NAS campaigners help create more opportunities and support for people with autism to find sustainable work

Since launching the Undiscovered Workforce campaign in  March, a number of Ambassadors and Champions have successfully worked with their MPs to run local events to raise awareness and increase number of people with autism in employment. 

 

The cooperation between passionate campaigners, interested local MPs, local authorities, charities, Jobcentre Plus and crucially, major employers is at the very heart of this campaign.

 

What's happened so far

 

In Leeds our ambassador Penny has joined forces with her local MP Rachel Reeves.  A combination of Penny's enthusiasm and Rachel's political leadership mean that the Council is taking notice.  There is an employment sub-group of the autism partnership board and a big one-day conference is being held next year to bring together big local companies, Jobcentre Plus and people with autism looking who need support to thrive at work. 

 

In Derbyshire, another of our dedicated Ambassadors, Ann, has engaged her local MP Heather Wheeler. They have got together to engage with the local Chamber of Commerce and leading employers based in the area.  Ann is also working closely with her local authority, which is planning to employ someone with autism in the next few months.

 

In Suffolk, activities were spearheaded with the support of Waveney MP Peter Aldous, who spoke at a local Jobcentre Plus event, along with the NAS, the National Apprenticeship Service, and Lowescroft College.  Suffolk County Council now has funding to hold employment events in the county in partnership with the NAS. 

 

Have you contacted your local MP about the Undiscovered Workforce? Would you like to help create more opportunities and support for people with autism to find sustainable work?   Take action here http://www.autism.org.uk/undiscoveredworkforce

Undiscovered Workforce campaign gathers pace

We've had loads of interest from ambassadors and champions in our Undiscovered Workforce campaign on employment. The campaign asks MPs to take the lead in creating employment opportunities for their constituents with autism, by bringing together local employers, people with autism, the local authority and other services in the community. The aim is to raise awareness of the difficulties facing people with autism who are looking for work and to ensure there is specialist support available for employers, as well as employees, to help people with autism succeed in the workplace.

Helen Kelly, an Ambassador from Tyne and Wear, supports the campaign because she is concerned for her 12-year-old daughter who has autism. "Her future worries me", she says, "She will be trying to get a job and I think her autism will be a disadvantage. There needs to be more awareness of the condition out there and people with autism should have the right to the proper support in a job".

Although she admits she was a little nervous at first, Helen wrote to her MP on the issue - the first time she had ever contacted him. However, her feelings soon changed when she realised she'd been sent a standard letter: "To be honest, I was a bit annoyed to get a generic email in reply. This is a serious thing - you can't just send a generic response".

Helen contacted the NAS with her MP's reply and we gave her a special response letter we've written for Ambassadors and Champions to send when they're not satisfied with their MP's response to the Undiscovered Workforce campaign.

Now Helen's looking to the next steps in her campaigning: "I would like to meet my MP and put my case forward. This is a real issue, not only for people who are in the workplace now but also for those people with autism who will be working in the future. There are thousands of people in this situation, and the have the right to work like everybody else"

If you want to support the Undiscovered Workforce campaign you can send a letter to your MP through our website here: www.autism.org.uk/undiscoveredworkforce. If you've already sent an initial email and haven't received a reply or aren't satisfied with the response you have received, don't be afraid to politely challenge them on it. Or if your MP asks you how they can help, make sure you take them up on their offer. Get in touch us at aan@nas.org.uk and we'll give you advice on what to do next. 

There are loads of great things going on with the Undiscovered Workforce campaign around the country - we've had MPs writing to local businesses, organising breakfast events and pushing Local Authorities to set up supported employment services - don't let your area miss out!