Tuesday, 20 May 2014


On 20th July 2014 you are invited to do #AMileForAutism

You can walk, run or cycle a mile, or do it in any way you want to! Do 1 mile and donate £1 or more.

Do your mile and then text AMFA14 £1 £2 £5 or £10 to 70070 to support Ambitious about Autism, the national charity for children and young people with autism.

Post your #AMileForAutism picture to social media and nominate your friends to do the same.

Together we can raise money and awareness, and we can all be Ambitious about Autism.

Tuesday, 15 April 2014

My London Marathon

A year ago, I entered the London Marathon ballot, didn't tell anyone, and crossed my fingers. It worked, and a minor miracle occurred - I got a place on my first attempt. Fast forward to a year later, and there I was, on the start line, waiting to go. It all felt quite surreal. When I entered the ballot the most I had ever run was about 4 or 5 miles. My training had gone well up until about 5 weeks before the big day, where during my 20 miler I had stupidly managed to slip off the pavement, injuring my foot and then my hip. The last couple of weeks I hardly ran at all, to try and prevent it getting worse, as even walking was quite painful at times. But it felt a lot better in the last few days of last week, so I was hopeful it would get me round.

I spent quite a bit of time in those couple of weeks worrying if I would manage to do it. Then a few days before I woke up one morning with the realisation that this might be the one and only time I got to do the London Marathon, so whatever it took I would finish it and I would blooming well enjoy it too.

And I had the extra incentive to keep me going, knowing that I was running as part of Team Ambitious, raising money and awareness for Ambitious about Autism. No further motivation was needed.

My hip behaved itself until about mile 8, and then started to get painful. I had to stop a couple of times around miles 14 and 16 to try and stretch it out. And from mile 20 I had to walk quite a few times. But, I loved every single second of it. My hope of finishing around the 4 and a half hour mark went out of the window, but the crowds kept me going every single step of the way. It's quite hard to put into words exactly how amazing they were. I had people cheering me on, telling me to keep going and I could do it, calling out what an amazing cause I was running for, giving me a massive cheer every time I started to run again after walking. It was the most amazing thing. Not only that, but having family, friends, and the Ambitious about Autism cheering points around the course really made a difference. I first saw my family just before mile 9, then again for a much needed hug just after mile 18. By that time it was hurting quite a lot, and I was thinking of the race in terms of "just to the next cheer point". I knew that the UKRunChat team would be at mile 19 and it was great to get a smile and cheer from them, then Ambitious about Autism were at mile 21.5 for a big cheer, a wave, and a huge smile. I was spurred on to mile 23 knowing that Ambitious about Autism had a samba band there. They were amazing, not to mention the supporter who spotted me coming, and ran over so that she could give me a much needed high five as I went through. I ran the whole of the last mile with one of the Runner's World Pacers. I had been near him for most of the second half so thanked him for keeping me going. We agreed that we would run the rest of the way, and it was possibly the best mile of them all. As we came up to Buckingham Palace he was whipping the crowd up to cheer extra loudly, telling me "they're cheering for you" and we crossed the line together with hands aloft, celebrating. It was something I shall never forget.

It was an absolute joy to run for Ambitious about Autism, and my fundraising total currently stands at just over £1700, more than I could have hoped for. I am particularly touched by the generosity of people who I have never even met, it's been incredible, and thank you to every single person who donated.

Being part of Team Ambitious has also meant that I got to meet the lovely Kate. Turns out we live near each, both started running for similar reasons, and have got quite a bit in common for one reason or another. Also turns out I love running with her. And turns out she's ace. So we met up with each other at the start, soaked up the atmosphere together, had a lot of fun, and ran the first 12 miles together before my hip decided I had to slow down. I couldn't think of anyone I would rather have done all that with, and I'm hoping we might get to do it all again another time too.

It's not too late to sponsor if you would like to, donations can be made to my Virgin  Money giving page here: http://uk.virginmoneygiving.com/SusanSpence2014 or you can text SSLM77 £1 to 70070 to sponsor me £1.

So, (and here's something I would never have thought possible a year ago) job done - I'm a marathon runner!

Tuesday, 25 February 2014

My brilliant biggest boy

It's a miracle. My second blog post within a week. A year or so ago I was writing something new at least 2 or 3 times a week. If I'm being honest, there was lots to write about. And lately there hasn't been, which is a good thing because it means everything has been going smoothly, according to plan.

But it occurred to me that an update on my biggest boy was probably a little overdue. It occurred to me on the walk home from school this afternoon. On a walk home where he made me laugh most of the way home. Where he didn't actually walk but danced home for at least half of the way. Where he was telling me jokes that he knew would make me laugh. Where he asked if he could make me a cup of tea when we got home.

The short version is, he's doing BRILLIANTLY. Not only is he coping with school, but he's enjoying it. In fact, I would go so far as to say he positively bounced in to school yesterday morning, on the first day back after half term. And I'll admit that at one point I never could have believed that would be possible. Not only that, but he has been off the anti-psychotic medication for over 2 months, medication he was on for over a year and a half, and a fairly hefty dose of it at that.

What a dude.

I can't quite explain how proud I am of him. But wanted to share it, so that everyone who has been with us from the start could see how brilliant he is, how hard he has worked, how far he has come. And to give hope to anyone who may be at the start, who may be where we were a year or so ago.

My brilliant biggest boy.

Saturday, 22 February 2014

50 days

50 days. In 50 days time I will be running the London Marathon. Now there's a sentence my old PE teachers would never have believed. I'm 36 years old, and up until almost exactly a year ago, school PE lessons was the last kind of exercise I had (begrudgingly) taken part in.

Then I heard about Couch to 5K. I still wasn't remotely a fan of sport, but I am fairly stubborn and I do like a challenge. So I thought I would give it a go. Mainly for the 'no one would think I could do it, so I'm going to do it' reason.  And much to my surprise I didn't find it completely hideous, and actually quite enjoyed it. Me! Enjoying running! I didn't really tell anyone I was doing it, and ran in a park which was set back from the road to minimise my chances of being seen by anyone I knew. Then, as I was starting to run for longer and longer, I got a bit bored of running round the same circuit, got brave, and actually ran on actual pavements, where people I actually knew might be able to see me.

And I kept running further and further. And I kept loving it. I entered myself for a 10K, which I enjoyed. And then, I found myself in the lucky position of running my first half marathon, the Great North Run, as Jo Whiley's running buddy. I can't quite explain how much fun that was, and how much I loved it.

A couple of weeks after that, I found out that I had got a ballot place in the 2014 London Marathon. I hadn't actually told anyone I'd even entered the ballot, not even my husband. I had heard about the people who have entered for years and years in a row and never got a place. And I got one on my first year of entering! I'm a big believer in things happening for a reason, and took this as a sign that someone somewhere thought I should keep running.

I also have an extra motivation to keep running, and that is raising money for Ambitious about Autism. They are the national charity for children and young people with autism, and the work they do is amazing. Their mission is to help children and young people with autism to learn, thrive and achieve. I ran the Great North Run for them, and knew as soon as I got my marathon place that I would run again for them too. As part of Team Ambitious I was lucky enough to visit Tree House School a couple of weeks ago, and see some of the ways they put this mission in to action. I left feeling inspired and even more dedicated to raising as much money as possible for this amazing charity. As a parent of a child on the autistic spectrum I am inspired by their positivity and outlook. I am thankful that they exist to help and support not only children with ASD, but also their families.

So, this time last year the longest I could run for was 3 minutes. Yesterday I ran for over 3 hours, and ran 18 miles. In 50 days I shall run the London Marathon. All 26.2 miles of it. I shall run it proudly as part of Team Ambitious, wearing my Ambitious about Autism vest, and knowing that I am raising as much money as I possibly can for the most amazing cause.

If you are able to sponsor me a £ or 2 you can do so here:


You can also sponsor me by text, by texting SSLM77 followed by either £1, £2, £3, £4, £5 or £10 to 70070. So to sponsor me £2 you can text SSLM77 £2 to 70070.

Thank you.

Tuesday, 28 January 2014

STAARS Project - major new research into early detection of Autism and ADHD

Last week I was invited to Birkbeck, University of London, for the launch of the STAARS project - Studying Autism and ADHD Risk in Siblings. The aim of this project is to learn more about the early development of baby brothers and sisters of children with either autism or ADHD, in the hope that the study will provide long-term help to improve early detection and diagnosis of children with autism and ADHD.

It was a fascinating morning. We began by hearing about the work that the Babylab does, and the research that has already been done into early detection of autism. We were told that 40% of children with ASD also meet criteria for ADHD. Those working on the STAARS project feel it is important to understand what early risk factors might be specific to ASD or ADHD, and which risk factors might be common to both conditions. Children with an older sibling with one of these two conditions have a significantly higher possibility of also developing either ASD or ADHD, and so it is these younger siblings on which the new research will focus. As a parent of a child with ASD, I fully understand how earlier detection and diagnosis would be a welcome and positive step, leading to earlier support and earlier access to relevant services. It was also explained that approaches to treatment of the two conditions have, up until now, had separate traditions, but this might be about to change. Understanding early infant neurodevelopment may also identify new types of interventions. Early results of the research are expected in 2017/2018.

We were then taken on a tour of the Babylab itself, which was fascinating. It was a relaxing environment, and it was obvious that participating in the research is a fun experience for both the children involved and their parents. A parent whose child had been involved in an earlier phase of research was also present during the morning, and confirmed that this was very much the case, that it was great fun, and actually a lovely way of spending time with your baby. We were shown research methods such as the eye tracker, the EEG sensor net, and the Near Infrared Spectroscopy hat. This NIRS hat it was explained, was helping to fill a research gap that currently exists because of the practical problems of young children undergoing an MRI scan. It was explained that babies up until the age of about one could undergo an MRI scan when they were asleep, and children from about six years of age upwards were old enough to have the process of an MRI explained to them before undergoing it. However the gap exists in between these two ages, and the NIS hat is helping provide research to fill that gap. Research techniques include monitoring whether babies respond more to social cues (e.g. an image of someone smiling) or non social cues (e.g. a tractor), monitoring how the brain responds to socially interesting videos and sounds, play based assessments, questionnaires, and DNA samples to name a few.

So, in order to carry out this ground breaking research, infant scientists are needed! The STAARS project is looking for families who are expecting a baby or have a baby up to the age of ten months old, who also have an older sibling who has already been diagnosed with either an Autism Spectrum Disorder or ADHD.  200 families are needed, 100 with a sibling with autism and 100 with a sibling with ADHD. Following my morning at the Babylab, I know that I would absolutely get involved if I had a child young enough to take part. If you meet the criteria, and would like to know more you can visit the STAARS website here or you can email staars@bbk.ac.uk

Knowing how hard our own personal battle was to get an autism diagnosis for my son, any research that may make this process a little easier in the future can only be a positive step. I know that an earlier diagnosis for my son would have meant earlier access to relevant support and services, and a much less traumatic time for not only my son but also our whole family. If you can, I would urge you to find out more, and get involved.

Tuesday, 31 December 2013

2014 - A year of running for Ambitious about Autism

In 2012, my eldest son was diagnosed with Asperger Syndrome. It was a challenging time for all our family, and I began running as a way of having a little time to myself, and as a way to relieve some of the stress.

In 2013 I have gone from being someone who couldn't run up the road, to completing my first half marathon - the Great North Run 2013.

2014 is the year that I run my first Marathon! I am very excited to have a place to run the London Marathon on 13th April. I'm also running the Silverstone Half Marathon, the Bupa London 10K, and the Great North Run. There may also be a couple more events to add to that list! I'm doing it all to raise as much money as possible for Ambitious about Autism, the national charity for children and young people with autism. If you are able to sponsor me you can do so here:


You can also sponsor by texting SSLM77 plus the amount you wish to sponsor me (£1, £2, £3, £4, £5 or £10) to 70070. For example, text SSLM77 £2 to 70070 to sponsor me £2.

Thank you so much for your support and your kind donations. It means so much, and is that extra incentive to keep training and keep running.

Saturday, 21 December 2013

3 wishes came true

I haven't blogged in a really long time, but I just remembered this post that I wrote almost exactly  year ago, in which I made 3 wishes for 2013. I read it again, and thought that an update was well overdue.

I first started writing this blog fairly soon after J's diagnosis. It was a really tough time for all of us, and blogging it out was a way of helping to make sense of it all. For about a year after the diagnosis came J was only able to cope with an hour of school per day, and on a one to one basis. The classroom was a noisy, scary place and his anxiety was so high it was too much for him to cope with. We had incredible support during this time from CAMHS, Autism Outreach, and Hospital and Outreach, without all of whom a return to school would never have been possible. There were many times when we just couldn't see how he would ever be able to be able to be back with his class again. But slowly, and surely, he was able to do it. Probably the best phone call I have ever had came from school. My heart sank a little when I saw the number come up on my phone, only to answer it and be told "J says he would like to stay in school all day today, and wants to know if you can bring his lunch down please." And he was back.

Every school event this term has reminded me how far he was come in the last twelve months. At the Harvest Festival last year he went along with his Dad, but was unable to control his anxiety and they had to leave after ten minutes. This year he not only took part along with the rest of his class, but climbed up the steps to the pulpit, and did a reading in front of the whole school and all of the parents. Last year he sat with me for the Christingle Service, and struggled throughout. This year he stood in the middle of the church, proudly holding his Christingle along with the rest of his class. Not to mention this years' Nativity where he stood on stage with everyone, belting out all the songs with a huge smile on his face, and gave me a thumbs up at the end. My eyes may or may not have been leaking a bit at this point.

And another milestone, today is the first day in over a year and a half that he hasn't taken any anti-psychotic medication. Obviously that is early days, but he's been on just a minimal dose for the last three months, so (on the advice of his psychiatrist) we're trying to be free of it over the holidays and seeing how we go. And how wonderful that will be.

Next year presents new challenges for J, the main one being the transition to secondary school ,which is of course a huge change. But the school we've chosen seems perfect for him, the support available for him is really impressive, and he seems genuinely quite excited about it, so it's a good place to be starting from.

As for me, this year has been incredible. I discovered running, much to my surprise and the surprise of those who know me - and I love it. Not only that but I got the opportunity to do the Great North Run with lovely Jo Whiley. We were running buddies in the build up to the race, training together and encouraging each other, and it was the most brilliant experience, and I loved every minute. It also gave me the opportunity to raise money for Ambitious about Autism, a charity that is so close to my heart. And in a moment of possible madness I entered the ballot for the 2014 London Marathon....and got a place! I'll be running for Ambitious about Autism again of course. I'm nervous, but excited and absolutely determined to do it.

To return to my 3 wishes, it's safe to say that they all came true, and without any stress or worry. 2014 is shaping up to be pretty good too.