The fully mobile Autistic young person and aging
May 11, 2024 9:11 PM Subscribe
I've been asked to design a large garden space to include a young person (twelve-ish, female) who is a high-functioning, able bodied autist (they have a formal autism diagnosis).
I expect they will likely age where they are (at least for a decade, likely longer). So that I can design for likely ability trajectories I am interested in overviews of how mobility and perception change across life for able-bodied people with this diagnosis.
I can normally find something useful in areas where I have zero knowledge, but at least on Google Scholar research is swamped with 'assistive technologies', robotics and 'human computer interfaces'>. There seem to be too many studies of the 'Oh this is a nice problem' and not develop anything useful, and a paucity of studies looking at life histories and developmental change. The usual lack of long-term science.
I have previous asked here re spaces for sufferers of MS and Me/CFS
The few books I've found have very little on autism Making Disability Modern and Jos Boys Doing Disability Differently: An alternative handbook on architecture, dis/ability and designing for everyday life. Both are very useful, especially for the designer and activist and as critiques of policy, but not for this topic.
I expect they will likely age where they are (at least for a decade, likely longer). So that I can design for likely ability trajectories I am interested in overviews of how mobility and perception change across life for able-bodied people with this diagnosis.
I can normally find something useful in areas where I have zero knowledge, but at least on Google Scholar research is swamped with 'assistive technologies', robotics and 'human computer interfaces'>. There seem to be too many studies of the 'Oh this is a nice problem' and not develop anything useful, and a paucity of studies looking at life histories and developmental change. The usual lack of long-term science.
I have previous asked here re spaces for sufferers of MS and Me/CFS
The few books I've found have very little on autism Making Disability Modern and Jos Boys Doing Disability Differently: An alternative handbook on architecture, dis/ability and designing for everyday life. Both are very useful, especially for the designer and activist and as critiques of policy, but not for this topic.
I just realized my answer included nothing about aging! I'm afraid I can't give very specific answers, since I am autistic but not able-bodied. I do want to note that over the next two decades this kid will be facing (teens and twenties) one change for me was needing to find ways to shape my spaces, habits, and stims in ways that were more "hidden"/socially acceptable. This may or may not be a concern for her, depending on how open-minded her friends and family are.
That is to say, all of the sensory-friendly tools and equipment I linked to fulfill their purpose but are not exactly designed with aesthetics in mind. An autistic teen will probably not want to invite friends over into a space filled with things that look like brightly-coloured kids toys! I mean, as a physically disabled adult, I am sometimes still grumpy about how boringly functional my wheelchair looks, especially when I am dressed up for an occasion.
For a garden space, especially if it becomes a social space as she grows up, that could look like — just spitballing here — a swinging bench for sitting with friends instead of a trampoline, or adjustable lighting like a string of garden fairy lights (sensory friendly, but seems cool and trendy instead of like an accessibility support tool).
Other than that: to my knowledge, the ability trajectories for autistic people vary greatly depending on the individual. And upon how much support they continue receiving into adulthood. Unfortunately, the government seems to think that autism ends when you turn 18, so much life skills supports and accommodations available to autistic kids are not available to adults.
Please feel free to Memail me if you'd like help understanding the sensory needs the kids/parents tell you about, or brainstorming more suggestions. Sincerely, an autistic person who also knows a lot of autistic people. I'm so happy that this kid's parents care about their needs and I'd be happy to help.
posted by fire, water, earth, air at 1:00 AM on May 12 [4 favorites]
That is to say, all of the sensory-friendly tools and equipment I linked to fulfill their purpose but are not exactly designed with aesthetics in mind. An autistic teen will probably not want to invite friends over into a space filled with things that look like brightly-coloured kids toys! I mean, as a physically disabled adult, I am sometimes still grumpy about how boringly functional my wheelchair looks, especially when I am dressed up for an occasion.
For a garden space, especially if it becomes a social space as she grows up, that could look like — just spitballing here — a swinging bench for sitting with friends instead of a trampoline, or adjustable lighting like a string of garden fairy lights (sensory friendly, but seems cool and trendy instead of like an accessibility support tool).
Other than that: to my knowledge, the ability trajectories for autistic people vary greatly depending on the individual. And upon how much support they continue receiving into adulthood. Unfortunately, the government seems to think that autism ends when you turn 18, so much life skills supports and accommodations available to autistic kids are not available to adults.
Please feel free to Memail me if you'd like help understanding the sensory needs the kids/parents tell you about, or brainstorming more suggestions. Sincerely, an autistic person who also knows a lot of autistic people. I'm so happy that this kid's parents care about their needs and I'd be happy to help.
posted by fire, water, earth, air at 1:00 AM on May 12 [4 favorites]
Response by poster: Thanks so, so much fire, water, earth, air, I couldn't learn these things in a month of Sundays (or any other days). I will read through the week.
Point taken: "(sensory friendly, but seems cool and trendy instead of like an accessibility support tool)".
"so much life skills supports and accommodations available to autistic kids are not available to adults.", yes I've seen this happen to people, and I do envision (even tho' I've not yet lifted pencil) the space as a series of places to grow older in. Thank you for the Memail offer.
posted by unearthed at 1:32 AM on May 12 [2 favorites]
Point taken: "(sensory friendly, but seems cool and trendy instead of like an accessibility support tool)".
"so much life skills supports and accommodations available to autistic kids are not available to adults.", yes I've seen this happen to people, and I do envision (even tho' I've not yet lifted pencil) the space as a series of places to grow older in. Thank you for the Memail offer.
posted by unearthed at 1:32 AM on May 12 [2 favorites]
I'm an autistic adult with a garden and opinions. (But I'm only one autistic adult, and we're all pretty different, as I'm sure you know, so Your Client May Vary!). There are a few garden "patterns" that I appreciate and that I think are particularly autism-friendly, as well as being relevant for all ages, at least from 12 on up.
The first pattern is "Nook With A View". By this I mean, some defined area that feels private but still has a strong sense of connection with the rest of the space. This "private" feeling can come from a combination of design elements like:
- elevation
- being in a corner
- having a seating-height wall one on one or more sides
- having a roof, like a porch or pergola
- being not more than about two meters wide
- being visually separated from other spaces, for example by material use, planting, lighting. I have idly wondered about designing a garden entirely composed of linked Nooks with varying Views!
Another pattern I like is a Corner Seat. That is, I like seating that has two high "backs" at right angles so I can scooch into the corner and be supported on two sides. For example, a bench with a high back that goes around two or more walls of a Nook. A hammock that's hung with the ends closer together than you'd normally expect, and one end higher than the other, can also be supportive in the way of a Corner Seat.
The third pattern that I think is autism-related
is Transitional Space. That is, a space that's articulated as its own thing, but is ambiguous about which neighbouring space it belongs to. Examples:
- A porch
- A small kitchen where someone leaves the door open and wanders freely into the adjacent small yard.
- A broad flight of steps that are good for sitting on while observing the area at the bottom.
- A Nook that looks over a path between two other places.
- A low wall between two spaces that can be used as a seat, especially if there's something at the end of the wall to form a seat back.
- A window seat looking over an interesting space.
The last pattern I can think of is Choice Of Shade. I'm very heat sensitive (as in, I really don't handle hot temperatures well), so I have a whole lot of different spaces in my garden that are shaded at different times of day so there's always somewhere shady to go - or somewhere sunny, in the winter.
Good luck! I'd love to hear more about what you end up doing.
posted by quacks like a duck at 2:25 AM on May 12 [21 favorites]
The first pattern is "Nook With A View". By this I mean, some defined area that feels private but still has a strong sense of connection with the rest of the space. This "private" feeling can come from a combination of design elements like:
- elevation
- being in a corner
- having a seating-height wall one on one or more sides
- having a roof, like a porch or pergola
- being not more than about two meters wide
- being visually separated from other spaces, for example by material use, planting, lighting. I have idly wondered about designing a garden entirely composed of linked Nooks with varying Views!
Another pattern I like is a Corner Seat. That is, I like seating that has two high "backs" at right angles so I can scooch into the corner and be supported on two sides. For example, a bench with a high back that goes around two or more walls of a Nook. A hammock that's hung with the ends closer together than you'd normally expect, and one end higher than the other, can also be supportive in the way of a Corner Seat.
The third pattern that I think is autism-related
is Transitional Space. That is, a space that's articulated as its own thing, but is ambiguous about which neighbouring space it belongs to. Examples:
- A porch
- A small kitchen where someone leaves the door open and wanders freely into the adjacent small yard.
- A broad flight of steps that are good for sitting on while observing the area at the bottom.
- A Nook that looks over a path between two other places.
- A low wall between two spaces that can be used as a seat, especially if there's something at the end of the wall to form a seat back.
- A window seat looking over an interesting space.
The last pattern I can think of is Choice Of Shade. I'm very heat sensitive (as in, I really don't handle hot temperatures well), so I have a whole lot of different spaces in my garden that are shaded at different times of day so there's always somewhere shady to go - or somewhere sunny, in the winter.
Good luck! I'd love to hear more about what you end up doing.
posted by quacks like a duck at 2:25 AM on May 12 [21 favorites]
Here's my Pinterest board that has a lot of examples of the patterns I'm talking about above.
posted by quacks like a duck at 3:25 AM on May 12 [2 favorites]
posted by quacks like a duck at 3:25 AM on May 12 [2 favorites]
This is a great and interesting question, thank you for bringing it here!
Some brilliant answers already above, I just wanted to add some ideas as someone who is undiagnosed but was very likely an autistic teen with a garden growing up.
Given the fact that your client is interested enough in outside spaces and gardens to (presumably) ask for such a space, I would also assume that she might be particularly interested in nature in general, and might appreciate planting or architecture to accommodate those interests. Maybe a small greenhouse or planting space where she can grow things, or insect houses/insect-friendly planting to encourage wildlife. A pond might be a good idea, where she can observe and study insects or animals that use it. Having something to do in the garden will help connect her to the space and might make it feel less like an Accommodation and more of a safe place that's hers.
As you're probably well aware, it will be very important for you to talk to her (or find out from her parents) to discuss sensory issues, as already mentioned, but also to ask her what she wants from her garden and what she's interested in. She might have lots of ideas of her own and is likely well aware of what she wants!
And yes please do keep us updated if you can, I'd love to know how this turns out.
posted by fight or flight at 4:21 AM on May 12 [3 favorites]
Some brilliant answers already above, I just wanted to add some ideas as someone who is undiagnosed but was very likely an autistic teen with a garden growing up.
Given the fact that your client is interested enough in outside spaces and gardens to (presumably) ask for such a space, I would also assume that she might be particularly interested in nature in general, and might appreciate planting or architecture to accommodate those interests. Maybe a small greenhouse or planting space where she can grow things, or insect houses/insect-friendly planting to encourage wildlife. A pond might be a good idea, where she can observe and study insects or animals that use it. Having something to do in the garden will help connect her to the space and might make it feel less like an Accommodation and more of a safe place that's hers.
As you're probably well aware, it will be very important for you to talk to her (or find out from her parents) to discuss sensory issues, as already mentioned, but also to ask her what she wants from her garden and what she's interested in. She might have lots of ideas of her own and is likely well aware of what she wants!
And yes please do keep us updated if you can, I'd love to know how this turns out.
posted by fight or flight at 4:21 AM on May 12 [3 favorites]
Just a note in case you plan to ask this question in autistic online spaces (you might already be aware of this).
If you mention functioning levels and formal diagnosis, it's highly likely that the answers will derail into a discussion about the problematic aspects of functioning levels, and the validity of self-diagnosis.
You could specify "low support needs" which is the term used instead of high functioning in the new DSM5. And it's probably not necessary to mention self vs formal diagnosis at all, it's a highly controversial topic.
posted by Zumbador at 8:09 AM on May 12 [11 favorites]
If you mention functioning levels and formal diagnosis, it's highly likely that the answers will derail into a discussion about the problematic aspects of functioning levels, and the validity of self-diagnosis.
You could specify "low support needs" which is the term used instead of high functioning in the new DSM5. And it's probably not necessary to mention self vs formal diagnosis at all, it's a highly controversial topic.
posted by Zumbador at 8:09 AM on May 12 [11 favorites]
you might like having a look at some of the activities & design elements from a the .
posted by wowenthusiast at 10:15 AM on May 12
posted by wowenthusiast at 10:15 AM on May 12
Autism Nature Trail at Letchworth State Park in upstate New York (how embarassing to have split my answers across 2 posts hours apart ayiyiy)
posted by wowenthusiast at 12:49 PM on May 12
posted by wowenthusiast at 12:49 PM on May 12
Something to swing on! Porch swing, sky chair, hammock, hanging chair. I also love all the design patterns posted above.
posted by matildaben at 3:40 PM on May 12 [1 favorite]
posted by matildaben at 3:40 PM on May 12 [1 favorite]
Response by poster: fire, water, earth, air Thanks for the phrase and contexts for "sensory processing disorder" and "sensory integration", a very phenomenological term, and something that all landscapes should do imo, but too many just want 'pretty' which ends up as pretty shallow!
'Asking the person', yes that can often prove too difficult; in almost all instances (except for three cases; Cerebellar ataxia, ME/CFS, and one I think CP) where I have designed a landscape to include a disabled person the person has been kept back from meetings, or their condition downplayed. Pushing would lose me the job. There is huge stigma to having a disabled/non-'typical' person in the family I think.
There is a concept in design called front-loading (which includes) where a designer knows that for a design to be successful it has to have certain attributes. Where a clients is against an attribute it is necessary to include that functionality in some obscured way, this is sometimes very difficult.
What Can a Body Do?: How We Meet the Built World, sounds exactly the kind of book I want to read. The author Sara Hendren (RI) is in my Jos Boys book with her wheelchair Accessible Icon initiative. Searching: "Accessible Icon" site:.nz came up with one company here that specialises in accessible space - and they're reasonably local - about 6 housrs drive.
I will take you up on your kind offer re Memail when this job starts moving, which might not be for 6 months.
quacks like a duck, difference is the nature of landscape for me; I've done ~600 jobs and the only thing they have in common is there are plants, peoples, a place, and often a problem.
Those are very useful patterns thanks. I'm wary of patterns / models (as people anchor to them) but yours are from experience or field-tested. Very valuable, even from one person's experience.
I didn't know that autism could make people susceptible to heat (adding to a growing list of conditions that affect thermo-regulation and that need including in urban design policy as heat events increase).
Your pinterest is very helpful, esp. 'Level change as space not boundary', I designed a curving ramp yesterday for inside a house to access a doorway. If the client likes it, it will also be a long bench seat at at 1:16 (no-where near what I'd call accessible - where I'd want 1:25, but better than the legal 1:12). I often design spaces with a ramp and steps as just makes sense, but more fun when the they cross/intersect/mesh.
Thanks fight or flight Yes there will be a lot of nature, and probably water - people expect me to take a more natural approach as I promote myself that way. If the job proceeds I hope to walk with her through some spaces that she likes. My client is very open about autism.
Good points re trigger phrases to use and avoid Zumbador. I often write a script to ensure my questions are trigger-free, 'clean langauge' (which I got from Sue Knight's NLP at Work, book is a very human and humane approach for Neuro-linguistic programming) for contentious situations.
wowenthusiast I figured somethings was coming after the '.', what a great park! The design team are listed here and the landscape architect company was Trowbridge Wolf Michaels (who have a near illegible website), their page for The Autism Nature Trail. It is worth looking through their Parks & Public Spaces category as their work is different to what I normally encounter
Thanks matildaben for recommending furniture that enables movement.
posted by unearthed at 12:05 PM on May 14 [1 favorite]
'Asking the person', yes that can often prove too difficult; in almost all instances (except for three cases; Cerebellar ataxia, ME/CFS, and one I think CP) where I have designed a landscape to include a disabled person the person has been kept back from meetings, or their condition downplayed. Pushing would lose me the job. There is huge stigma to having a disabled/non-'typical' person in the family I think.
There is a concept in design called front-loading (which includes) where a designer knows that for a design to be successful it has to have certain attributes. Where a clients is against an attribute it is necessary to include that functionality in some obscured way, this is sometimes very difficult.
What Can a Body Do?: How We Meet the Built World, sounds exactly the kind of book I want to read. The author Sara Hendren (RI) is in my Jos Boys book with her wheelchair Accessible Icon initiative. Searching: "Accessible Icon" site:.nz came up with one company here that specialises in accessible space - and they're reasonably local - about 6 housrs drive.
I will take you up on your kind offer re Memail when this job starts moving, which might not be for 6 months.
quacks like a duck, difference is the nature of landscape for me; I've done ~600 jobs and the only thing they have in common is there are plants, peoples, a place, and often a problem.
Those are very useful patterns thanks. I'm wary of patterns / models (as people anchor to them) but yours are from experience or field-tested. Very valuable, even from one person's experience.
I didn't know that autism could make people susceptible to heat (adding to a growing list of conditions that affect thermo-regulation and that need including in urban design policy as heat events increase).
Your pinterest is very helpful, esp. 'Level change as space not boundary', I designed a curving ramp yesterday for inside a house to access a doorway. If the client likes it, it will also be a long bench seat at at 1:16 (no-where near what I'd call accessible - where I'd want 1:25, but better than the legal 1:12). I often design spaces with a ramp and steps as just makes sense, but more fun when the they cross/intersect/mesh.
Thanks fight or flight Yes there will be a lot of nature, and probably water - people expect me to take a more natural approach as I promote myself that way. If the job proceeds I hope to walk with her through some spaces that she likes. My client is very open about autism.
Good points re trigger phrases to use and avoid Zumbador. I often write a script to ensure my questions are trigger-free, 'clean langauge' (which I got from Sue Knight's NLP at Work, book is a very human and humane approach for Neuro-linguistic programming) for contentious situations.
wowenthusiast I figured somethings was coming after the '.', what a great park! The design team are listed here and the landscape architect company was Trowbridge Wolf Michaels (who have a near illegible website), their page for The Autism Nature Trail. It is worth looking through their Parks & Public Spaces category as their work is different to what I normally encounter
Thanks matildaben for recommending furniture that enables movement.
posted by unearthed at 12:05 PM on May 14 [1 favorite]
Neurodivergent but undiagnosed adult here. You've had lots of good answers, but I don't think anyone's said quite this yet, so:
One of the things that really set me apart as different in adolescence was that I didn't really change (other than the obvious external stuff) between the ages of 12 and 20. Or since, honestly; I'm in my 40s now. The stuff I liked doing outside when I was 12 is the stuff I still want to do outside now: climbing on things, swinging on things, sliding on things, smelling herbs and flowers, identifying beetles, listening to birdsong, watching light on water.
So... if I had a good big secluded back garden, and the money to make this happen, it would have a pond with a fountain, a herb garden, trees for birds, and somewhere shady to sit; but, importantly, it would also have some nice sturdy play equipment, sized for adults and stylish enough to pass as sculpture, but meant for climbing on and swinging from.
posted by ManyLeggedCreature at 10:04 AM on May 15 [2 favorites]
One of the things that really set me apart as different in adolescence was that I didn't really change (other than the obvious external stuff) between the ages of 12 and 20. Or since, honestly; I'm in my 40s now. The stuff I liked doing outside when I was 12 is the stuff I still want to do outside now: climbing on things, swinging on things, sliding on things, smelling herbs and flowers, identifying beetles, listening to birdsong, watching light on water.
So... if I had a good big secluded back garden, and the money to make this happen, it would have a pond with a fountain, a herb garden, trees for birds, and somewhere shady to sit; but, importantly, it would also have some nice sturdy play equipment, sized for adults and stylish enough to pass as sculpture, but meant for climbing on and swinging from.
posted by ManyLeggedCreature at 10:04 AM on May 15 [2 favorites]
Response by poster: Thanks so much ManyLeggedCreature, I will have to think more about your words re change and not changing.
I once read of a garden that I believe is in my country (but I cannot find it) where the parents of a boy sought out a landscape architect to design a garden with a range of climbing challenges that would be up there with advanced parkour, dangerous for most people, and their child would apparently effortlessly, and endlessly explore.
posted by unearthed at 2:02 AM on May 16
I once read of a garden that I believe is in my country (but I cannot find it) where the parents of a boy sought out a landscape architect to design a garden with a range of climbing challenges that would be up there with advanced parkour, dangerous for most people, and their child would apparently effortlessly, and endlessly explore.
posted by unearthed at 2:02 AM on May 16
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Sensory processing disorder can exist separately from autism, as part of other neurodiversities or disabilities, but someone with a formal diagnosis will probably have sensory processing disorder as a component of their autism. It will influence the way they navigate and experience physical space, and their level of comfort and stress in that space. A safe-feeling space that supports sensory integration for an autistic person could potentially have a huge impact on her functioning and stress levels.
This sensory processing disorder resource site looks like it was made in 1995 but I promise, it's a great place for detailed, example-supported information about sensory processing.
The tricky thing is, the "settings dials" are set differently for each unique individual. It would be ideal if you could ask the young person and her parents for information about what her sensory processing is like. That is to say: going through each of the 5+2 senses, all together, and discussing if she is hypersensitive or hyposensitive or what specific sensations she prefers and avoids. This checklist will help you do that.
These particular pages might then help you generate ideas, examples to offer your clients, or just know what sorts of products can be built or bought:
- Sensory Integration Equipment (examples of furniture, equipment, or textures that support sensory integration)
- Sensory Integration Products (types of things that are available for purchase)
- Heavy Work Activities
This is more of a theoretical book than a "practical tips" one, but it might be of interest to you in your field: Sara Hendren's What Can A Body Do?: How We Meet The Built World is an amazing book about architecture and design for disability, full of thoughtfulness and optimism. Hendren is a designer, academic, and mother to a disabled kid.
posted by fire, water, earth, air at 9:44 PM on May 11 [12 favorites]