“There are no words” is the fictional story of Jaxon, a non verbal, but literate girl with autism.
Mary Calhoun Brown is a very talented writer with the ability to narrate the story of Jaxon in a very beautiful way. Her use of language to describe how Jaxon feels and sees the word helps readers understand many of the sensory issues faced by people with autism and increases understanding and awareness of this condition. This is a very educational but also easy to read and entertaining book and I would like to recommend it to people of all ages.
Thanks Mary for writing this book. I wish you all the success you deserve.

Today I would like to introduce Jeff Stimpson to all of you. Jeff is 47 and lives in New York with his wife Jill and their sons Alex (11) and Ned (9). Jeff maintains a blog atjeffslife.tripod.com/alextheboy, and is the author of “Alex: The Fatheringof a Preemie” and “Alex the Boy: Episodes From a Family’s Life WithAutism.” He also blogs for many other sites around the Net.
I would like to thank him for his contribution to this blog. I hope all of you will enjoy it.

Great Escapes by Jeff Stimpson

By far the loudest “Ooooo” I usually get from audiences when I tell them about Alex is from the bit about his leaving the apartment.

This hasn’t happened in a long while, but, like breaking a tooth on food, when it happens once it’s over fast but lives long in memory. Basically, Alex, 11, semi-verbal and PDD-NOS, had been zipping out of our apartment and down the hall as far as the elevators for maybe a few months, usually when nobody was watching.

“Go get Alex!”

“Can’t you watch him!”

Alex left the apartment – in his underwear and a T shirt; it was sort of cute – once or twice during the daytime. We would search our building for several minutes, which was really a waste of time since all we had to do was go to the basement storage room in front of our lockers, where ages ago we stashed an Elmo video. “Elmo?” Alex said as my wife Jill dragged him back upstairs.

But that was a whole lot different than when the phone rang at 4 a.m. Please God let it be some drunk guy, I thought.

“Alex is in Marie’s apartment!” Jill said.

We bolted into the living room, where the lights were on and Alex sat in front of the TV, watching Elmo with the volume low. He must have unlocked our front door and left our apartment soon after I’d gone back to sleep.

Marie, our neighbor, said Alex came in and turned on all the lights, including one she herself didn’t know how to work. Then he left.

I hung my head that morning and prayed I was still asleep and dreaming. Jill said little, but dove onto the Net to Google locksmiths and door alarms. “Alex, you CANNOT leave the apartment!” we took turns saying. We snapped off Elmo. Jill continued to tap the keyboard. Marie has daughters at home, I thought into my hands. It’s one thing for an 11-year-old boy to do this. But what happens when that boy is no longer 11 and maybe isn’t so cute anymore, either?

That morning I learned the word “elopement.” It’s something that autistic people and victims of Alzheimer’s do. I know of one boy who did this a lot. He’s 14 now, I think, and his parents have put him in some kind of facility.

So. Locks. Marie pointed out that Alex could lock us out with chain locks and deadbolts, even if they’re installed high (he’ll simply stand on a chair the same way he once, when he was two, stood on the open door of the dishwasher to reach Pringles). We’ve often thought of a more sophisticated lock on the inside of our door, but NYC fire regs forbid inside-facing key locks. Through this day we discovered that we’d need a variance from the fire department — no, the fire department told us, we’d need it from the city Department of Buildings, which didn’t answer its phone — to get a combination lock installed what amounts to backwards. “You want it how?” the clerks said in hardware store after hardware store, turning the locks upside down to show that they can’t be installed that way no matter how hard two parents stared at the Medeco displays like a couple of RCA/Victor dogs with red-rimmed eyes.

Can Alex figure out an alarm? We buy three: two tiny white jobs that stick to the jam and to the door and that when separated while ON! send their sound right through your skull like Elmo’s voice. We put one on the front door and another on the door of the boys’ bedroom, and I tell Jill to use the latter during my upcoming few nights on a business trip. We also get an alarm that looks like a micro-cassette recorder; it hangs from the knob of the front door and goes off when jiggled. Alex laughs at the sound.

I strongly believe that if we want to understand autism we must listen to people who have the autistic spectrum condition but that have also developed a good level of insight into their condition.  The internet and social networks have facilitated  establishing links between people and I think we should all take advantage of these new technologies.  It has been thanks to this that I have come into contact with Rory Hoy, a boy from Yorkshire committed to helping all of us understand his condition.

Rory has sent me an e-mail narrating his experiences growing up with autism and all his projects for the future.  I would like to thank Rory for allowing me to publish this on my blog.  I am sure many people will enjoy reading it. 

Best wishes for the future Rory and I hope you get in touch.

Autism & Me

An article by Rory Hoy

31/10/09

I only knew about my autism in 2003, as Mum and Dad wanted to wait until I understood what autism was before telling me all about it. They felt that I would be able to cope better if I was a little more mature and understanding. I always wondered why I was different from everybody else! I was in a special school until I was nearly 9, and Mum and Dad said I was really in a world of my own for a long time. I was late in talking and found it hard to understand what was going on a lot of the time. I went into mainstream school and really started progressing, especially at secondary school where I managed to get 10 GCSEs and 2 A levels. I still felt different and school was not always easy, but I had good support and seemed to cope all right. I’ve been very lucky with my schools as they’ve been great and have helped me a lot.

Since August 2002, I found I had a talent for making short silly films. I made quite a few and had a couple shown on BBC TV! My first ‘serious’ project was my film ‘Autism & Me’ and one that, I know, has helped countless people worldwide. I felt there needed to be something out there that was more simple and easy to see or read than all the endless books and stuff, which were hard to understand. It’s a film families and groups can watch together and hopefully they will come away understanding a little more about us. One lady said she felt she knew her son for the first time after seeing it – so I must have done something right! I get messages from all over the world about this film and I feature in lots of forums and blogs. The film is now released worldwide on DVD together with a booklet I’ve done through Jessica Kingsley Publishers (www.jkp.com) and it’s also been a great help to schools and professionals. I do often go into schools and organisations where they show my film and talk afterwards about my autism and experiences and do Q&A sessions, which is always rewarding and I meet some great people! I’ve appeared many times on British and American TV and Radio and I’ve had lots of lovely letters and praise from famous people about the film, including Stephen Fry, Michael Palin and the lovely Billie Piper! I’ve won lots of national awards for this film, including a UNICEF award, a Royal Television Society nomination, a NASEN & TES Award and a Film 4 Youth Award, which was presented to me by Film Director Guy Ritchie, who is involved in the large charity UK Youth. In fact, UK Youth have asked me to be a Centenary Ambassador for them in 2010, which is a great honour. You may be interested to see a short promotional film, with an appearance from me at the end!

http://www.epiphany.myzen.co.uk/UKYouth/UKYouthPositive.html

. A 5-minute cut-down version of ‘Autism & Me’ even popped up on YouTube via Film 4 Youth. It’s funny, as the channel’s subscribers are all there because of my film, and do not realise I have a proper YouTube account myself, which is more about my music.(http://www.youtube.com/user/roryhoymusic) .

And music is what I am doing now!  I am an up-and coming Music Producer.(www.myspace.com/roryhoy)  I was signed to legendary Minnesota DJ Freddy Fresh’s Howlin’ Records label in 2007, which resulted in the critically acclaimed chillout album “Cosmic Child” released in March 2008.This album is now being used as background music and is even played on some American airlines! Another more “Funky Breaks” album called “Standing On Dust” was released July this year, which sees me go into territory based on my various influences including Fatboy Slim, James Brown, Mr. Scruff, The Wiseguys and Freddy Fresh himself. Many DJ’s have picked up on my “Standing On Dust” tunes including BBC Radio 6 DJ and Actor – Craig Charles, who’s played me 3 times on his ‘Funk & Soul’ show!

At the moment, I have remixed the likes of RamSkank, Boomjuice, DJ Prosper and Dan Le Sac VS Scroobius Pip. I am also making a single for Skint Records (The label Fatboy Slim is on) who have re-launched their ‘Under 5s’ label and have a 12” vinyl EP coming out on BigM Records run by famous Mick from Mick and Marc. I am working on various singles and EPs on different labels, and I’m also working with various artists around the world, so it’s all very exciting.

I am Youth Patron of the charity ‘Resources for Autism’ and was invited to their 10^th Anniversary celebrations at the House of Lords because of this. They are based in London and have also opened a centre in Birmingham (www.resourcesforautism.org.uk ) and do some great, innovative work with children and young people on the autistic spectrum.

Have I finished raising Autism Awareness? No!

My pet project since the beginning of the year is to hopefully conceive a charity single to help raise Autism Awareness. I want to do a joint collaboration with a celebrity singer along the lines of Joss Stone or Duffy. That would be just the icing on the cake!

I hope I will be able to realise my ambitions, as being positive about myself makes my dreams come true.

Rory

I am a Speech and Language Therapist and a teacher.  Since I graduated in 1997 I have been working with children and adults with different types of learning difficulties.  In 2002 I started focusing on children with autism and since then I have been fascinated by them.  I am passionate about people with autism and day after day I have found it incredibly fascinating working with very unique individuals. I am very grateful to all my students with high functioning autism or Asperger who have taught me so much about what living with autism is.  Some students can develop the level of insight that has enabled us to have discussions about what having autism is and what helps and does not help people with autism.

Do I love my job?   The answer, without a doubt is yes.  I would find it very hard now to work in something completely different and not related to autism somehow.  However, I also feel ashamed to admit, that… I also love the fact that at the end of my working day (very long hours sometimes) I am glad that I can go home and relax.  My mind frequently continues thinking about my students   and I still wake up in the middle of the night trying to find answers and strategies to help my students but… I do not have to constantly live with autism.

So what is living with autism like?

Adam, a 15 year old boy with high functioning autism has told me “I have now learnt how to control it and I am feeling like a normal bloke and everyone helped me for it which I am very proud of.  Now I have an ipod so I can listen to my songs to make me chill for a while.  So yeah, I feel like a normal bloke, nothing wrong at all and that is it!”

I am really glad of knowing that Adam is making good progress and turning into a happy young man.

From a parents’ point of view Mary Dhonau, mum of one of my former students with severe autism, has very openly expressed what living with autism means for her and her family.  I admire Mary for expressing these ideas so honestly and beautifully and I would like to invite other parents to listen to her recordings.  Very emotive and direct from her heart, Mary managed to put tears in my eyes.

So… what is living with autism like?  Well… I still do not know and I would like more parents and people with autism to share their ideas with us professionals so that we can improve the quality of  the services we offer.

Looking forward to hearing from all of you.