During World Autism Awareness Month we invited members of our Facebook page to ask JKP authors a question of their choice and we were overwhelmed by the high level of response. In this second instalment of answers, Joshua Muggleton responds to questions on how best to prepare for starting university, leaving home and progressing into adulthood.
Many of our questions look to ask advice on how best to prepare young adults for life after school and the move to university. Just like moving from primary to secondary school this can be a daunting time. Do you have any reflections from your move to secondary school to university? Did you feel fully prepared beforehand, if so what kind of things helped you to feel confident about the move?
Moving to university can seem a lot more daunting than moving to secondary school – there is a lot more unstructured time, you have to look after yourself, and that’s before we even get to the academic work. That said, a lot of people with AS who hated school love their time at university – including me!
There were three things that really helped me move to university. The first was my college. I went to a specialist college for people with AS, and they helped me prepare and get my Disabled Students Allowance (DSA) assessment done, improved my confidence with public transport and budgeting, and even took me to see the university (no mean feat, given that St Andrews is in the middle of nowhere, and doesn’t even have a train station!). In short, for my last year (if not earlier) they were starting to prepare me to move on to university.
The second thing was the Student Support team at my university, in particular, my advisor, Malcolm. He got my DSA assessment, which gave him an idea of my support needs, but he also took the time to contact me, get to know me, and ask me what he could do to help. This covered everything from exam concessions, and booking tutorial times in advance, to helping with accommodation. I remember once, I was worried that I would not be able to get Melatonin, which I have been prescribed to help me get to sleep. I mentioned this to him, and he asked if he could call me back in 10 minutes. 10 minutes later, he told me he had been down to the chemist, and they told him they would stock it for me. It is this individual approach that really made the difference.
However, the one bit of support I could not have done without is Academic parents. This is a student lead tradition in St Andrews, dating back to the middle ages, when students would come as young teenagers, and still need a parental figure. Then older students adopted incoming students into families. In modern times, third and forth year students adopt incoming freshers in the same way. I was lucky enough to have a family friend, whose daughter was about to enter her final year at St Andrews, and who also had a son with Aspergers Syndrome. Her daughter, Hatty, got in touch with me, and offered to be my academic mum. She was there to meet me on the day I moved into halls, helped me get through the freshers week schedule, introduced me to societies, and Phil, who would later become my academic dad, and generally met up with me every now and then to check in on me. The support of both my academic parents was by far the most useful. I am still in touch with them both, as well as my own eight academic kids.
I was filmed by channel 4 for the run up to university, and my first year. You can still see clips of this at www.yeardot.co.uk.
Part of going to university usually means moving away from home. Glyn Charlesworth asks “hi josh how did moving away from home go for you? Did you need or get any support? My 25 year old is thinking of moving out. Is there anything I can do to help him through this?” How did you find living independently? What do you feel could help our followers get a better understanding of what its like to make those first steps to independence and how best to support those ready to make the move?
I suppose I moved away from home in two phases. The second, moving to university, I have just covered. However, the first phrase was when I moved to a specialist residential college for people with Aspergers Syndrome, where I lived Monday to Friday. This was a really tough time for me (partly because for the first year, I had to share a room), and my dad told me after my first year that he had kept a full tank of petrol in the car, as he thought I might get a call saying I couldn’t take it any more and I had to come home. However, I wanted to do it, as I know it was the only option for me to start to do what I wanted to do.
The fact your son is thinking of moving out is great – half the battle has already been won. The next bit is using that motivation to make it happen. I would start doing work on budgeting, cooking (including healthy eating), laundry skills, food shopping, how to pay bills etc. This can all be done while at home before he moves out, and starts to allow him to learn how do these things while in an environment where he can make mistakes with minimal consequences. When he is confident and able to do these things without prompting, then you can look at moving out.
Moving in might be quite quick, if he has learned all the life skills earlier. However, it is still a new environment to get used to, so it could take a while for him to feel comfortable there. This might mean he is only there one night a week, then two, then three. Equally, he may have problems applying the life skills you have taught him in a new environment, so you might have to go over and help him for a while.
In both myself, and my brother (who has more severe autism, and just moved into supported living), moving out has given us a lot more confidence given us more space where we can feel safe (once we feel safe there), so it is definitely worth doing if you can!
And our final question is from Shelly Hester “Hello Joshua. My daughter is 12 years old and I just want to prepare her for all that is ahead. What is the most important thing your parents did for you to help you feel confident making your own way in life?”
Ooh, that’s a tricky one. I suppose the most important thing my parents did to give me confidence changed over time, and as I developed. Two things do really stick out in my mind though.
The first is that exams are just a piece of paper. Yes, they can be useful, but they are not worth living and dying over. Schools really seem to drum into kids the importance of exams, and how they are vital to the rest of their life, and frankly, scare children into studying, which is just wrong. My parents reassuring me that exams weren’t everything helped take the pressure off, and, when it came to A levels, helped me enjoy studying again.
The second bit, which is perhaps more relevant post GCSEs, was they told me to do what I wanted to do. I think this is best summed up in a video someone showed me on youtube, its well worth a watch (http://tinyurl.com/joshjkp). After the pressure of exams, comes the pressure of money – you have to get a well paying job, even if you don’t like doing it, which is just stupid. My parents gave me the confidence to follow a path to do what I want to do.
There is a bit in the video where the narrator says the only way to become a master of something is to love it, and I think this is particularly true for people with Autism. We have our passions, things we love to do, and when these are tapped, we can become masters of it, and sought after. Often the most successful people with Autism aren’t those who learn to fit into a job they don’t really like. They are those with a well developed skill that means people seek them out, and don’t mind their executrices because their skill is so finely honed, rare, or sought after, that they are willing to adapt to fit the person with autism. My advice, therefore, is to find that passion, that thing your daughter really enjoys. It may take years to find, and it might change once or twice, but once she’s found it, chase it, and find a way to make it a job. If she can take that passion and really become a master of it, then people will come to her for it.
Joshua Muggleton is the author of Raising Martians from Crash Landing to Leaving Home (2011) published by Jessica Kingsley Publishers.