Throughout World Autism Awareness Month 2013, our readers were offered the opportunity to ask JKP authors a question of their choice. Josh Muggleton, author of Raising Martians from Crash-Landing to Leaving Home, provides an insider’s perspective on growing up with Asperger Syndrome. He answers questions on understanding Asperger’s and how best to survive the school environment.
“When do I talk to my child about ASD? He’s 10 at the moment.” From Lisa
As a general rule, I think the best time to explain your child’s diagnosis is when he or she starts asking about it, or seems to realize he or she is different. If you try to explain it much earlier they may not be able to see any difference (and so not really believe it) or they might not be able to fully understand it. However, if you leave it later, then realizing you are different, but not understanding how or why can be quite an upsetting or depressing experience.
I remember when I started to realize that when I different, I was about nine or ten (but other people will realize it at different times). There wasn’t one moment, but over a period of months, maybe a year, I started to see that I seemed to think in a different way, and that I had problems understanding how other people expressed themselves. This made me start to get a bit depressed, and encouraged me to spend more time alone. Other people get depressed, but express this by getting angry at other people – “its your fault, not mine” type thinking.
On balance, too early seems better than too late, so I would err on the side of caution. However, there is an important caveat to all of this. I can only tell you when I feel is best for most children, but this will not apply to all. Equally, knowing that your child has realized they are different is very subjective. Ultimately, nobody knows your child better than you. Most parents, when they ask me this question, tend to have a “gut feeling”, and are looking for re-assurance to follow their gut. My advice is to follow that gut.
On a final note, one way that I often recommend introducing the idea of ASD for younger kids is the excellent book All Cats Have Aspergers Syndrome by Kathy Hoopmann. For older kids, looking at some of the big figures in history who are thought to have had Aspergers Syndrome can be a good way (Michael Fitzgerald has two great books for this The Genesis of Artistic Creativity and Genius Genes). The important thing is to introduce it as a pattern of strengths and difficulties. The name is simply a way to describe that pattern, and to allow people to share strategies to maximize strengths, and find ways to overcome difficulties.
“Hi Josh how did you cope with the move from primary to high school and what tips would you suggest to help my son going through this transition?
Moving to secondary school is a demanding time for any child, but particularly for those on the spectrum. The unfortunate truth is that I didn’t cope at secondary school. I didn’t have a diagnosis at that time, or any sort of support from the school, which meant I went down hill quite quickly. Your child, however, is in a different position – he or she has a diagnosis. In the UK that gives you some leverage with the school, who, as far as I am aware, are required under the Disability Discrimination Act to make reasonable adjustments in order to accommodate disabilities, regardless of whether or not your child is statemented (quoting the disability discrimination act at them not only makes you look smart, but also tends to start things moving).
Ultimately, kids with a diagnosis going into secondary school are already going to be working much harder than every other kid, because lunch time and break time aren’t breaks for us, and in addition to learning the academic stuff, we are also learning the social stuff. If we are giving 100% to try and adapt, we need the school to come the rest of the way. Providing teacher training/education, safe areas to go during breaks, a single teacher who we go to for any problems, and the ability to leave classes to cool down for 5 mins, are all ways that have been used effectively in the past, to different degrees for different people. However, the most important thing by far is preparation.
Preparation is for both the school, and the student. For the student, it is getting to know teachers, rooms, routes, sights, sounds, smells, routines, schedules, and 101 other things, so that they are going into school on day one knowing exactly what is going to happen, and what to do. For the teachers, it is about learning about the student: understanding both the diagnosis and the individual, and how best to support that particular student. Through this preparation, student, parents, and school should be able to identify potential problems, and their solutions, well in advance, to try and facilitate a smooth transition.
I have created two documents to help with school transitions, both of which are available for free on my website (www.mugsy.org/josh). The first is a 1-page (double sided) information sheet about Aspergers Syndrome for teachers. This is designed to give them the basics of the diagnosis, and tips for teaching people with AS, all on one piece of paper that they can keep to hand. The second is an information sheet (double sided) to be filled in by the student, staff and parents, to give teachers a quick guide to this particular individual, and how to support them. The whole idea with both of these documents is to give teachers the necessarily information quickly, easily, and in a form that they can keep to hand.
Joshua Muggleton is the author of Raising Martians – from Crash-landing to Leaving Home (2011) published by Jessica Kingsley Publishers.