Fiona H. Reeves's Blog
February 23, 2017
Brain scans to detect autism in babies may not mean that families receive the support they need
I wrote a blog post for the Together Trust, which went on their website today. It's on the topic of the recent news about scientists using brain scans of babies to predict autism diagnosis. You can find the blog post at:
https://www.togethertrust.org.uk/blog/brain-scans-detect-autism-babies-may-not-mean-families-receive-support-they-need
https://www.togethertrust.org.uk/blog/brain-scans-detect-autism-babies-may-not-mean-families-receive-support-they-need
February 16, 2017
Don't tell me what I already know!
There were several books I requested as presents for Christmas. One was Tony Robinson’s No Cunning Plan, which I thoroughly enjoyed (of particular interest to me was that he and my dad both grew up in Woodford after many generations in the East End of London). I found it a surprising page turner. My next book, which I’m currently reading, is Chris Packham’s 'Fingers in the Sparkle Jar: A Memoir’.
Chris Packham is one of the BBC’s wildlife presenters, and has an aspergers diagnosis. I’m enjoying his book, but I do have difficulty sometimes when he starts a new topic. For the first several paragraphs of exquisite description I can be really struggling to work out what he’s talking about! Once that has been revealed to me I can get on with really enjoying the rest of the section. I think this is a reflection of me feeling the need to know in what direction something is heading - I have to remind myself to not worry about that and just enjoy the words I'm reading right now, not second guess the narrative. It has meant that I find the book sufficiently hard work that I’m taking a long time to get through it, which I regret. (Also, I love the cover of the book and the fact that Chris designed it himself!)In his book, a description of a visit to a museum reminded me of my son. Chris writes of his father coming over to him, telling him a lot of things that he already knew, then wandering off again as Chris ignored him. My son would have handled that differently, he would have shouted “I KNOW!” in frustration!
The trap that people often fall into is thinking that autistic people have not taken in what they have said (or in the museum case, underestimating the person's knowledge and understanding). It’s not altogether surprising - if you don’t get any kind of response or acknowledgement from someone you tend to automatically assume that they haven’t paid attention to you, but this isn’t necessarily the case for an autistic person. It’s quite likely that they have heard and taken in everything you have said. Also don’t assume that they won’t remember - it may be that they don’t have the self organising skills to act on it in the way you want them to, but that doesn’t mean that they don’t understand or remember what you said.
If you talk to someone autistic and you don’t get instant feedback please be patient! They may need time to process what you’ve said, or simply not see the need to respond. It is of course possible that their mind is focussed on something else, but don’t assume it! If you need some feedback then don’t just automatically repeat yourself, instead be patient and then ask a (non-patronising) follow up question to check.
Of course, if you’re in a noisy, busy, chaotic environment that won’t be the best place to try to have a conversation (you’re competing with distractions and sensory bombardment), you need to make sure you have their attention. For my young son, if I know he’s busy with something, I’ll start by saying something like “[Name], can I ask you a question?”, or “can I just tell you something?”. I make sure I’m close by, I’m not shouting across a room or something. If, after waiting, he hasn’t responded to my question I’ll physically get down to his level, gently touch his arm and repeat the question - he’ll usually then answer and indicate that he’s switched his attention to me - if not and it’s not urgent, I’ll leave it for now and try again later.
February 13, 2017
Bursting peas (about sensory sensitivity)
Last week I was skimming through an academic research paper on the subject of sensory processing in autism. What I was interested in was reading the direct quotes from the group of autistic adult friends discussing their experiences. A few of them agreed that they couldn't stand the sensation of foods that popped or burst in the mouth, like peas.
I'd previously understood about temperature, texture, how hard or soft the food is, and combining foods being potential areas of difficulty, but hadn't considered the way that foods change as you chew them being a source of disgust, but it makes perfect sense! You only have to think of people eating an eyeball on such things as the TV show 'I'm A Celebrity Get Me Out Of Here', where the burst of the eyeball in their mouth is the most disgusting part, to appreciate the problem - peas (or similar) could be just as nauseating for someone with aural sensitivities.
My son announced yesterday that he finds peas too squashy (his choice of vegetable is broccoli - he eats the flower part and leaves the stalk). He's only ever eaten a few peas at any meal, and that all started years ago with a book called Peas!: It's Not Easy Being Peas-y, a fantastic book which my son absolutely loved. It's about two peas called Pete and Penelope (if I remember their names correctly!). That book was the start of my son becoming willing to try new foods and, years later, he now actually asks to try new things sometimes (he can still also reject trying a new thing you offer him).
He understands that as you grow older your food likes and dislikes can change, which is one of the reasons he is insterested in occasionally trying a nibble of something, and he sometimes comments that maybe he'll like it when he's older :) He also knows that we will never force him to eat something he doesn't want to, which gives him the confidence and security to try things - he will never get into trouble for then not eating it all (some tries can result in food spat out into some kitchen roll and a rush to the sink to rinse his mouth out, but that doesn't put him off!).
I have suggested to my husband (who does all the cooking in our household), that he try serving up frozen peas to our son next time. Frozen peas that are still frozen. I remember that when my daughter was younger she used to like having a small bowl of frozen peas as a snack! Perhaps our son will like eating frozen peas, which will of course be hard and crunchy, and he does like iced water, so the combination of cold and crunchy may work well for him. I'll do an update when we've tried it out!
I'd previously understood about temperature, texture, how hard or soft the food is, and combining foods being potential areas of difficulty, but hadn't considered the way that foods change as you chew them being a source of disgust, but it makes perfect sense! You only have to think of people eating an eyeball on such things as the TV show 'I'm A Celebrity Get Me Out Of Here', where the burst of the eyeball in their mouth is the most disgusting part, to appreciate the problem - peas (or similar) could be just as nauseating for someone with aural sensitivities.
My son announced yesterday that he finds peas too squashy (his choice of vegetable is broccoli - he eats the flower part and leaves the stalk). He's only ever eaten a few peas at any meal, and that all started years ago with a book called Peas!: It's Not Easy Being Peas-y, a fantastic book which my son absolutely loved. It's about two peas called Pete and Penelope (if I remember their names correctly!). That book was the start of my son becoming willing to try new foods and, years later, he now actually asks to try new things sometimes (he can still also reject trying a new thing you offer him).He understands that as you grow older your food likes and dislikes can change, which is one of the reasons he is insterested in occasionally trying a nibble of something, and he sometimes comments that maybe he'll like it when he's older :) He also knows that we will never force him to eat something he doesn't want to, which gives him the confidence and security to try things - he will never get into trouble for then not eating it all (some tries can result in food spat out into some kitchen roll and a rush to the sink to rinse his mouth out, but that doesn't put him off!).
I have suggested to my husband (who does all the cooking in our household), that he try serving up frozen peas to our son next time. Frozen peas that are still frozen. I remember that when my daughter was younger she used to like having a small bowl of frozen peas as a snack! Perhaps our son will like eating frozen peas, which will of course be hard and crunchy, and he does like iced water, so the combination of cold and crunchy may work well for him. I'll do an update when we've tried it out!
February 11, 2017
Guy Martin and Aspergers
I was awake in the night last night, around 5am-ish incase you're interested, and although I wasn't feeling distressed about anything (I can suffer from anxiety) I wasn't feeling able to go straight back to sleep. So I did what I always do in these situations, which is continue listening to the audio book I was listening to last time I was awake in the night. At the moment that book is 'Guy Martin: My Autobiography'.I discovered Guy Martin a year or two ago from his TV series, I now always watch one if I see it's on. I love his enthusiasm for everything! When my daughter stopped listening to audio books I had two book credits left to use before cancelling my subscription, so I chose Guy Martin's two books. I've been gradually making my way through the first.
Whilst I was listening last night, I had a thought that maybe he could be autistic. I immediately derided myself - telling myself I was just seeing autism everywhere and to stop being ridiculous. So it was rather sureal when he then recounted his trip to a psychiatrist who told him he had aspergers! This morning I'm half wondering whether I just dreamt that part!
The obvious signs of his autism were there in his single minded focus and love of all things mechanical, he finds working on trucks, and being in his van, relaxing and comforting as well as productive work; and of course his intense discomfort and difficulty with crowds of fans and being asked to approach and talk to strangers for TV work. He also has integrity, honesty, and huge attention to detail - which is of prime importance if you're hands on wanting your bike to be just right for racing!
I love that Guy Martin has both been public about his aspergers, and in a way that isn't a sensationalist big deal. It's a mention, and an explanation of why he can't be involved in huge PR events to the extent that other people are (he's not just being intentionally "difficult" or a "diva" - how anybody could think that who knows anything about him at all is pretty crazy - you'd be hard pressed to find anybody so down to earth!). He's still just Guy Martin getting on with his life. Not that he's looking to be one, but I think he's a good awareness advert for how infinitely different everyone on the spectrum is - not everyone exhibits extremes like Rain Man or The Curious Incident of the Dog In The Night-time, as wonderful as it is to have those too - the more variety everyone sees the more they can appreciate that there is no one distinct picture of autism, it's different for everyone.
February 4, 2017
Autism-friendly specific sessions - the good, the bad, and the ugly
The number of places offering specific autism friendly sessions for autism families is steadily increasing. I believe public museums and art galleries lead the way, with businesses following in their footsteps - some supermarkets, trampoline parks, soft play areas etc. now offer specific autism and disability opening/sessions.
Whilst acknowledging that this is great news for families who otherwise might not be able to access these facilities at all, and the training staff receive, there are some definite downsides. Certainly the fact that a place offers a specific autism session shouldn't be a substitute for being inclusive outside of that session.
Timing
One aspect of these specific sessions which I have a problem with is when they are scheduled. They tend to be very early in the morning, before the usual opening start time (in the case of children), or late in the evening (in the case of adults, for example for supermarket shopping).
I think there is a general perception that families with young children must always be up at the crack of dawn and that therefore there is no problem with going to an event which starts early in the morning. Even ignoring the fact that it can take a while to get out of the house with children, and that it can take much longer with autistic children, there is the sleep factor.
Having in the past attended an excellent sleep workshop for parents of autistic children, run by the Together Trust (which I can highly recommend!), I know that autistic people have more sleep problems than the rest of the human race. Second comes people with other disabilities. Autistic people suffer from nightmares, night terrors, sleep walking, difficulty getting to sleep, difficulty staying asleep...
(The big difference between nightmares and night terrors is that someone who experiences a nightmare wakes up and remembers having a nightmare. A person experiencing a night terror will exhibit being incredibly distressed in their sleep, which is extremely upsetting to see, but when they are awake they have no knowledge that they have experienced a night terror.)
The Together Trust explains the problems and provides many practical strategies to help, they can even take on your specific case to investigate and solve or improve the sleep situation you're struggling with. The group workshop was enough for me to just instigate a new bedtime routine which worked wonders and got my son to sleep much earlier.
Bearing in mind then, that autistic people often suffer from sleep problems, perhaps having specific sessions for them that start either early in the morning, or late in the evening (which has the additional consideration of bedtime routine, and the cumulative stresses of the day), is not exactly ideal. It is extremely rare for my own (young, autistic) son to be awake before 8am and, when not having to get out to school, he will choose not to have any breakfast until at least 10:30am or later. He prefers a slow start to the day.
Scheduled disability
A friend recently booked and took a group of autistic children on a trip to a trampoline park, a fun social activity together. All the children had been to trampoline parks before and knew the rules. As is the case with all trampoline parks, the children needed to take part in a safety briefing before their hour long session started. How that safety briefing is delivered obviously differs from place to place (I've seen it as a very quick chat before the kids go on to the trampolines). At this particular place the children were expected to watch a video presentation, but this took place in a room with several particularly noisy and distracting children's parties taking place and this environment was far too chaotic for the children, who couldn't stand to be in the room for long enough to watch the video.
After explaining the issue to the staff they said they could not allow the children on to the trampolines because they hadn't watched the video. They did not offer any alternative way of accessing the safety briefing, instead making the children wait 15 minutes to watch the video when the room was quieter, thus missing out on a quarter of their jumping time. As a seeming chastisement, the staff pointed out that they run a specific autism session (on a Sunday evening!) on a specific day, suggesting that they should have been going to that session. To me this attitude is wrong on so many levels!
Disabled people are not only disabled to suit a schedule. They're not only disabled from 9-10am once a month on a Saturday morning, or 6-7pm on a Sunday evening each week. They should not have to feel that the only time they can attend something is within a very specific window of opportunity and that they're not allowed out in public otherwise. If you train your staff for specific autism events then don't just train the staff for those events, take the opportunity to train all your staff, and think about what you can do to make your whole offering, throughout the whole week, more disability friendly.
The trampoline park could have shown the children the video in another, quieter room (even on an iPad!), or given the children a safety rules leaflet to read outside of the noisy space, or a member of staff could have told the children what they needed to know - there were so many easy solutions to the problem which could have been implemented with the minimum of fuss and hassle and mean that the children were not being disadvantaged. If you want to be autism friendly, having a quiet room people can go to if they need some relief from a difficult environment is a good first step. If the trampoline park had a quiet room, then the children could have received their safety briefing there.
Resources:
@autismInMuseums on Twitter, and their website. Promotes and advertises autism provision in museums - find out what's happening near you.
The Together Trust and their autism sleep counselling service (the group parent workshops they run travel the country, but do not happen often due to funding for staff. They also undertake sleep research).
Whilst acknowledging that this is great news for families who otherwise might not be able to access these facilities at all, and the training staff receive, there are some definite downsides. Certainly the fact that a place offers a specific autism session shouldn't be a substitute for being inclusive outside of that session.
Timing
One aspect of these specific sessions which I have a problem with is when they are scheduled. They tend to be very early in the morning, before the usual opening start time (in the case of children), or late in the evening (in the case of adults, for example for supermarket shopping).
I think there is a general perception that families with young children must always be up at the crack of dawn and that therefore there is no problem with going to an event which starts early in the morning. Even ignoring the fact that it can take a while to get out of the house with children, and that it can take much longer with autistic children, there is the sleep factor.
Having in the past attended an excellent sleep workshop for parents of autistic children, run by the Together Trust (which I can highly recommend!), I know that autistic people have more sleep problems than the rest of the human race. Second comes people with other disabilities. Autistic people suffer from nightmares, night terrors, sleep walking, difficulty getting to sleep, difficulty staying asleep...
(The big difference between nightmares and night terrors is that someone who experiences a nightmare wakes up and remembers having a nightmare. A person experiencing a night terror will exhibit being incredibly distressed in their sleep, which is extremely upsetting to see, but when they are awake they have no knowledge that they have experienced a night terror.)
The Together Trust explains the problems and provides many practical strategies to help, they can even take on your specific case to investigate and solve or improve the sleep situation you're struggling with. The group workshop was enough for me to just instigate a new bedtime routine which worked wonders and got my son to sleep much earlier.
Bearing in mind then, that autistic people often suffer from sleep problems, perhaps having specific sessions for them that start either early in the morning, or late in the evening (which has the additional consideration of bedtime routine, and the cumulative stresses of the day), is not exactly ideal. It is extremely rare for my own (young, autistic) son to be awake before 8am and, when not having to get out to school, he will choose not to have any breakfast until at least 10:30am or later. He prefers a slow start to the day.
Scheduled disability
A friend recently booked and took a group of autistic children on a trip to a trampoline park, a fun social activity together. All the children had been to trampoline parks before and knew the rules. As is the case with all trampoline parks, the children needed to take part in a safety briefing before their hour long session started. How that safety briefing is delivered obviously differs from place to place (I've seen it as a very quick chat before the kids go on to the trampolines). At this particular place the children were expected to watch a video presentation, but this took place in a room with several particularly noisy and distracting children's parties taking place and this environment was far too chaotic for the children, who couldn't stand to be in the room for long enough to watch the video.
After explaining the issue to the staff they said they could not allow the children on to the trampolines because they hadn't watched the video. They did not offer any alternative way of accessing the safety briefing, instead making the children wait 15 minutes to watch the video when the room was quieter, thus missing out on a quarter of their jumping time. As a seeming chastisement, the staff pointed out that they run a specific autism session (on a Sunday evening!) on a specific day, suggesting that they should have been going to that session. To me this attitude is wrong on so many levels!
Disabled people are not only disabled to suit a schedule. They're not only disabled from 9-10am once a month on a Saturday morning, or 6-7pm on a Sunday evening each week. They should not have to feel that the only time they can attend something is within a very specific window of opportunity and that they're not allowed out in public otherwise. If you train your staff for specific autism events then don't just train the staff for those events, take the opportunity to train all your staff, and think about what you can do to make your whole offering, throughout the whole week, more disability friendly.
The trampoline park could have shown the children the video in another, quieter room (even on an iPad!), or given the children a safety rules leaflet to read outside of the noisy space, or a member of staff could have told the children what they needed to know - there were so many easy solutions to the problem which could have been implemented with the minimum of fuss and hassle and mean that the children were not being disadvantaged. If you want to be autism friendly, having a quiet room people can go to if they need some relief from a difficult environment is a good first step. If the trampoline park had a quiet room, then the children could have received their safety briefing there.
Resources:
@autismInMuseums on Twitter, and their website. Promotes and advertises autism provision in museums - find out what's happening near you.
The Together Trust and their autism sleep counselling service (the group parent workshops they run travel the country, but do not happen often due to funding for staff. They also undertake sleep research).
February 3, 2017
Special Educational Needs & Schools - Know The Law (UK)
A local autism support group I belong to recently had a speaker from Contact A Family, talking about the law with regard to Special Educational Needs and Disability (SEND). I highly recommend Contact A Family, both for individual needs, and also for the range of excellent talks and resources they can provide.
If you need legal advice then the legal charities SOS!SEN and IPSEA provide that, and IPSEA also provide excellent legal training courses, both for parents and professionals.
I highly recommend reading the SEND Code Of Practice, which details the law. It is grouped into sections, so you can read just the section detailing school's legal duties if that's what is relevant to you at the moment. Knowing the law will give you confidence to challenge any unlawful activity. IPSEA's website also has lots of easy to understand facts about legal duty.
Did you know the following facts?
Schools must tell parents when they identify a child as having Special Educational Needs and needing extra support.
Schools must meet parents at least 3 times a year to discuss how their child is progressing. (These meetings should be in additional to standard parents evening meetings and with the SENCO and learning support team).
Social, emotional and mental health difficulties are special educational needs.
Schools can develop their own system of record keeping to track child progress, but they must keep records.
SENCO's have to be qualified teachers.
The class teacher is responsible for the progress and development of pupils with SEN (not the SENCO).
Schools must draw up a plan outlining the provision they are making for a child with SEN (for example an IEP (Individual Education Plan), but it doesn't have to be in the form of an IEP).
Parents have a right to see their child's records.
Early year providers and schools must prepare in advance for a disabled child.
Early year providers and schools must identify SEN needs and make effective provision at the earliest point.
Maintained schools, academies and post 16 institutions have money within their budget for SEN and can decide how to use it. However, the money is not ring-fenced.
Parents can ask for an Educational Health and Care Plan (EHCP) needs assessment (it does not need to be requested via school). If the local authority refuses you can appeal (well worth doing as many more appeals win than lose).
Children, young people and families must be asked for their views during an EHCP needs assessment.
The local authority is responsible for drafting the EHCP.
Parents/young people have the right to ask for changes to a draft EHCP.
Post 16 institutions must admit a young person if it is named on their EHCP.
Schools and colleges must provide independent careers advice (preferably from Year 9 onwards for SEN children).
Local Authorities must continue to provide a young person with children's services until they decide about what provision they will receive as an adult. (There can be no gap in provision because adult services are not yet ready to make the transition.)
If you need legal advice then the legal charities SOS!SEN and IPSEA provide that, and IPSEA also provide excellent legal training courses, both for parents and professionals.
I highly recommend reading the SEND Code Of Practice, which details the law. It is grouped into sections, so you can read just the section detailing school's legal duties if that's what is relevant to you at the moment. Knowing the law will give you confidence to challenge any unlawful activity. IPSEA's website also has lots of easy to understand facts about legal duty.
Did you know the following facts?
Schools must tell parents when they identify a child as having Special Educational Needs and needing extra support.
Schools must meet parents at least 3 times a year to discuss how their child is progressing. (These meetings should be in additional to standard parents evening meetings and with the SENCO and learning support team).
Social, emotional and mental health difficulties are special educational needs.
Schools can develop their own system of record keeping to track child progress, but they must keep records.
SENCO's have to be qualified teachers.
The class teacher is responsible for the progress and development of pupils with SEN (not the SENCO).
Schools must draw up a plan outlining the provision they are making for a child with SEN (for example an IEP (Individual Education Plan), but it doesn't have to be in the form of an IEP).
Parents have a right to see their child's records.
Early year providers and schools must prepare in advance for a disabled child.
Early year providers and schools must identify SEN needs and make effective provision at the earliest point.
Maintained schools, academies and post 16 institutions have money within their budget for SEN and can decide how to use it. However, the money is not ring-fenced.
Parents can ask for an Educational Health and Care Plan (EHCP) needs assessment (it does not need to be requested via school). If the local authority refuses you can appeal (well worth doing as many more appeals win than lose).
Children, young people and families must be asked for their views during an EHCP needs assessment.
The local authority is responsible for drafting the EHCP.
Parents/young people have the right to ask for changes to a draft EHCP.
Post 16 institutions must admit a young person if it is named on their EHCP.
Schools and colleges must provide independent careers advice (preferably from Year 9 onwards for SEN children).
Local Authorities must continue to provide a young person with children's services until they decide about what provision they will receive as an adult. (There can be no gap in provision because adult services are not yet ready to make the transition.)
Supporting Students and Young People - Autism and Mental Health
Last month I attended the 'Supporting Students and Young People - Autism and Mental Health' free conference organised by Gareth Morewood in Stockport, UK. I chose to go to the workshops on building self-esteem, and puberty - to arm myself with knowledge for my son's future high school years!
Copies of the PowerPoint slides for all the workshops and talks are now available on Gareth's website. Here's some tips from the day, and books that looked interesting...
To start things off The Charlie Waller Memorial Trust talked about mental health problems, particularly anxiety and depression, including: what the warning signs are to look out for, about us being open about mental health issues as adults and our own experiences (to break the taboo), how people feel (parents and children), not dismissing calls for help (e.g. you're busy), and that full recovery can be made. They also provide free training and resources for schools.
An interesting looking book recommended by this talk was:
The Healthy Coping Colouring Book and Journal: Creative Activities to Help Manage Stress, Anxiety and Other Big Feelings
The 'Puberty and Autism Workshop' covered quite a lot in a short space of time. Some things I noted down to expand on the slides are:
You can ask your school for a copy of their sex and relationship education policy.
Boys tend to mature later than girls.
Be careful about children taking things literally to avoid unnecessary anxiety and terror about the future. Examples: for a boy, make sure that they know that their voice 'breaking' means it will sound deeper rather than that it will stop working; for a girl, make sure they know that their periods will last for a few days at a time, they won't start and then keep on continually each day for 40 years.
Children having access to a full length mirror is useful, not only so that they can explore what they look like, but so that they can see what they look like from behind and appreciate that other people can see them from behind.
To learn about and develop 'discrimination skills' you can show children lots of different pictures of people, including ambiguous pictures, and ask your child to try to categorise them into age and he/she. You can then see what they are using to identify/decide age and gender factors in others. Abuse tends to happen from someone older.
Things acceptable in private vs public. What's a good idea to do and what's a bad idea.
Check they're understanding what they're being taught.
Some books that looked useful from this session:
The Growing Up Book for Boys: What Boys on the Autism Spectrum Need to Know!
The Growing Up Guide for Girls: What Girls on the Autism Spectrum Need to Know!
What's Happening to Ellie?: A book about puberty for girls and young women with autism and related conditions
What's Happening to Tom?: A book about puberty for boys and young men with autism and related conditions
The self-esteem workshop was about what can be done to be pro-active in building good mental health and wellbeing as a defence against developing problems, rather than just being reactive when a problem has occurred. It didn't seem to be autism specific. Some things I noted down:
Teenagers need between 8 and 10 hours sleep each night.
"Don't tell me what I can't do, tell me what I can do".
Teenagers tend to focus on negative things in their day, e.g. complaining about a teacher or lesson which then becomes a hated subject. Rather than focusing on only the negative, or that the whole day was bad, using a gratitude diary to recognise that something good happened in the day is one idea for introducing some positive thinking.
How it works is that you note down (or draw a picture, tell someone - whatever they want to do which would not be a chore!) a few good things that happened. Those things must be specific (e.g. a particular person smiled at you, you met a friend for a coffee - it can't just be that you're thankful for your family). Existing gratitude diary models you can use:
The Gratitude Garden app
Thnx4 website
'Action for happiness' action pack.
December 1, 2016
Preview of new CBeebies show 'Pablo' about autism
At an autism support group today we were treated to a visit from the BBC to give us a sneak preview of a new show they're creating for CBeebies called 'Pablo', aiming to start airing in October 2017.
It's about an autistic boy called Pablo and the challenges he faces with his friends (for example going to a party, getting a hair cut etc.). The friends are characters he draws in artwork and each character represents a possible aspect of autism. This cleverly allows them to demonstrate some variety, instead of just presenting a one size fits all representation of autism. The big problem with trying to describe autism is that everyone is so different - you can have people who are complete opposites with autism just as you can with any member of the human race, each autistic person has their own unique presentation of autism that affects them in a different way. So having multiple characters showing different aspects is good!
It's fun and engaging and doesn't shove autism in your face, it probably won't even mention autism by name at all. So in many ways it will ultimately be about friendship and how everyone struggles with different things, and overcoming those struggles together.
Before showing us a completed animation sequence (it's bookended with live action which wasn't ready yet) we got to see a short film of behind the scenes - which was great because we got to find out just how many autistic people were involved in the production - and it's lots, including the starring actor playing 'Pablo' himself, and lots of the voice talent for the animated characters.
It's about an autistic boy called Pablo and the challenges he faces with his friends (for example going to a party, getting a hair cut etc.). The friends are characters he draws in artwork and each character represents a possible aspect of autism. This cleverly allows them to demonstrate some variety, instead of just presenting a one size fits all representation of autism. The big problem with trying to describe autism is that everyone is so different - you can have people who are complete opposites with autism just as you can with any member of the human race, each autistic person has their own unique presentation of autism that affects them in a different way. So having multiple characters showing different aspects is good!
It's fun and engaging and doesn't shove autism in your face, it probably won't even mention autism by name at all. So in many ways it will ultimately be about friendship and how everyone struggles with different things, and overcoming those struggles together.
Before showing us a completed animation sequence (it's bookended with live action which wasn't ready yet) we got to see a short film of behind the scenes - which was great because we got to find out just how many autistic people were involved in the production - and it's lots, including the starring actor playing 'Pablo' himself, and lots of the voice talent for the animated characters.
September 5, 2016
Telling my son about his autism diagnosis
My son was diagnosed with autism aged 6.
I wanted to tell him about his autism, because I think it's important that people know about their own diagnosis (it helps them to understand themselves - always a good thing, and they will notice differences in themselves anyway that they need to understand the reason for - not guess at a wrong reason), but I struggled to know how to go about it.
I didn't think a direct conversation would work, it can be difficult to get his attention sometimes and he also has a language processing delay/issue. He's always been better at reading things. Bedtime reading quickly became him reading to himself rather than us reading to him! He loves reading, and finding out things - science, how things work etc (but also funny books like the pig diary books by Emer Stamp, the Danger Is Everywhere series by David O'Doherty and the Storey Treehouse series by Andy Griffiths). He's very good at reading, and very fast too!
I initially tried buying a short picture book which had good reviews but I was extremely disappointed with it - because it was about the friendship of two boys, one with autism, which was incredibly tailored to very specific autism presentation, none of which seemed to apply to my son! So I didn't use it, and didn't know what to do next. What I really needed was an Usbourne "See Inside Autism" book, but it doesn't exist (my son loves those non-fiction books, and owns most of them).
So, eventually, I decided to write something myself for him. This idea gradually snowballed! At first I wrote and sketched by hand and thought I'd put together a handmade thing for him. Then I realised I could self-publish on Kindle and I paid an animator friend (Billy Allison) to draw some professional versions of my rubbish pencil sketches. It would then be something more appealing for my son which might engage and maintain his focus; he would know that his mum went to the effort of making a book for him and I could include a dedication. The book could then also be read by his friends, and if it was of any benefit to anybody else in the world it would be out there for them too. I just got it finished in time to publish on Amazon Kindle during World Autism Awareness Week in 2015. A print on demand paperback version followed (after an Amazon review request for a paperback version).
I've always been very open about my son's diagnosis, talking to parents of his friends, and parents of children in his class at school. I've always had a very positive reaction and I know some parents talked to their children about it and used my book when I launched it free during WAAW (World Autism Awareness Week); it benefitted everyone. It definitely benefitted my son to have people around him that had some level of awareness and understanding.
I do believe in peer awareness. Having attended an anti-bullying workshop for parents of children on the autism spectrum it (peer awareness) is highly recommended for helping the prevention of bullying (not only for the understandng of people who may otherwise be the bully, but also for your child having a barrier of people around them that understand and help to prevent others from bullying).
Knowing about my son's autism has also meant that parents sometimes ask me questions about it, giving me the opportunity to further spread understanding. They also sometimes tell me if they've heard something on the radio about autism, or seen something on TV or read an article - incase I'm interested; or thoughtfully ask if he'll be alright (sometimes their own child has prompted them, which is particularly wonderful) at their child's upcoming birthday party etc. (e.g. should they tell the professional leading the party, is there anything they should specifically cater for etc.).
So, if you are struggling with how to explain your young child's diagnosis to them, or would like a young child to understand something about autism, feel free to give my book a try! Everyone is different, but hopefully it gets that message across and that different isn't bad (it's an encouraging and positive book!); it's a conversation starter where you can then talk about how autism affects your specific child. My son, and some of his friends, read it at age 6/7.
The Children's Guide To Autism.
UK Amazon link | USA Amazon link
I wanted to tell him about his autism, because I think it's important that people know about their own diagnosis (it helps them to understand themselves - always a good thing, and they will notice differences in themselves anyway that they need to understand the reason for - not guess at a wrong reason), but I struggled to know how to go about it.
I didn't think a direct conversation would work, it can be difficult to get his attention sometimes and he also has a language processing delay/issue. He's always been better at reading things. Bedtime reading quickly became him reading to himself rather than us reading to him! He loves reading, and finding out things - science, how things work etc (but also funny books like the pig diary books by Emer Stamp, the Danger Is Everywhere series by David O'Doherty and the Storey Treehouse series by Andy Griffiths). He's very good at reading, and very fast too!
I initially tried buying a short picture book which had good reviews but I was extremely disappointed with it - because it was about the friendship of two boys, one with autism, which was incredibly tailored to very specific autism presentation, none of which seemed to apply to my son! So I didn't use it, and didn't know what to do next. What I really needed was an Usbourne "See Inside Autism" book, but it doesn't exist (my son loves those non-fiction books, and owns most of them).
So, eventually, I decided to write something myself for him. This idea gradually snowballed! At first I wrote and sketched by hand and thought I'd put together a handmade thing for him. Then I realised I could self-publish on Kindle and I paid an animator friend (Billy Allison) to draw some professional versions of my rubbish pencil sketches. It would then be something more appealing for my son which might engage and maintain his focus; he would know that his mum went to the effort of making a book for him and I could include a dedication. The book could then also be read by his friends, and if it was of any benefit to anybody else in the world it would be out there for them too. I just got it finished in time to publish on Amazon Kindle during World Autism Awareness Week in 2015. A print on demand paperback version followed (after an Amazon review request for a paperback version).
I've always been very open about my son's diagnosis, talking to parents of his friends, and parents of children in his class at school. I've always had a very positive reaction and I know some parents talked to their children about it and used my book when I launched it free during WAAW (World Autism Awareness Week); it benefitted everyone. It definitely benefitted my son to have people around him that had some level of awareness and understanding.
I do believe in peer awareness. Having attended an anti-bullying workshop for parents of children on the autism spectrum it (peer awareness) is highly recommended for helping the prevention of bullying (not only for the understandng of people who may otherwise be the bully, but also for your child having a barrier of people around them that understand and help to prevent others from bullying).
Knowing about my son's autism has also meant that parents sometimes ask me questions about it, giving me the opportunity to further spread understanding. They also sometimes tell me if they've heard something on the radio about autism, or seen something on TV or read an article - incase I'm interested; or thoughtfully ask if he'll be alright (sometimes their own child has prompted them, which is particularly wonderful) at their child's upcoming birthday party etc. (e.g. should they tell the professional leading the party, is there anything they should specifically cater for etc.).
So, if you are struggling with how to explain your young child's diagnosis to them, or would like a young child to understand something about autism, feel free to give my book a try! Everyone is different, but hopefully it gets that message across and that different isn't bad (it's an encouraging and positive book!); it's a conversation starter where you can then talk about how autism affects your specific child. My son, and some of his friends, read it at age 6/7.
The Children's Guide To Autism.UK Amazon link | USA Amazon link
