Forum search & shortcuts

Autism anyone?
 

[Closed] Autism anyone?

Posts: 0
Free Member
Topic starter
 
[#656878]

Hello,
Wondered if anyone has or is affected by autism.
My 4 year old son is profoundly autistic, we are looking at custom special needs bikes. Very very pricey.
I was hoping to organise a fund raising ride that can help families afford special needs bikes.
After attending a great talk by CTC we are now hopeful that some way our son will be able to enjoy the freedom that cycling brings.
Joel cannot speak or sign.
If we sit him on a saddle he just falls off and doesnt even understand how to grip the handle bars or peddle. I had a go on a lovely bike where he can sit on the front, he loved it!
Would love to hear from other parents and carers who are passionate about bikes and autism.
Lou x


 
Posted : 23/06/2009 8:51 pm
Posts: 50252
Free Member
 

A very dear friend of me has an autistic sister, so I cannot really comment on the bike piece, but I very much understand what this means to you.

Whereabouts are you? I'd certainly hope someone on here would be able to offer to help out on a local level

Good luck!


 
Posted : 23/06/2009 8:53 pm
Posts: 0
Free Member
Topic starter
 

Hey,
We are in Portsmouth on the south coast, although my other half hails from Cumbria, its his fault for making me crazy about mtb's. Hampshire maybe not that great for rides but it has its moments. I think the day we get a full suspension special needs bike is a long way off, theres a challenge.
Would so love to meet some like minded parents!


 
Posted : 23/06/2009 9:00 pm
Posts: 40
Free Member
 

Out of interest - have you been intouch with the RDA? My Mum runs the Westmoreland group and has had HUGE success with Autistic children so it would be worth persuing.


 
Posted : 23/06/2009 9:05 pm
Posts: 50252
Free Member
 

The RDA are indeed great people.

See if you cand find CliveA on here. He's involved with cycling development in Hampshire, so could be a good contact!


 
Posted : 23/06/2009 9:15 pm
Posts: 0
Free Member
 

I used to teach the children who had this.

Credit to their parents and themselves.


 
Posted : 23/06/2009 9:18 pm
Posts: 0
Free Member
 

Although not at all as profoundly autistic as your Joel, one of my nephews is autistic. Or perhaps I should say [i]was[/i] because although he was quite severe when he was a child and he needed to go to a specialist school, they helped him so much that it is pretty hard to detect these days. He got married about 4 years ago and is extremely happy. Sorry I can't help with any suggestions, but I just wanted to say that in my family's experience the help which is available to an autistic child is truly remarkable. And the improvements it brings are stunning and permanent. Good luck with a bike for Joel.


 
Posted : 23/06/2009 9:18 pm
Posts: 0
Free Member
Topic starter
 

I think it may be the same Clive from CTC who did the fab talk on special needs riding at Alice Holt forest. Didnt get much of a chance to talk to him as I had to dash off afterwards but he seemed a throughly nice bloke.
Who are RDA? Im familiar with the NAS. Its always great to find new sources of knowledge.
Can I also say I have only been a forum user for a short time and its been ace, what a decent bunch of people. Have loved reading Singletrack for awhile now. Do the readers have any kind of social gatherings or events?


 
Posted : 23/06/2009 9:34 pm
Posts: 0
Free Member
 

Do the readers have any kind of social gatherings or events?

Not too far from you I believe :

http://www.bigbikebash.co.uk/location.php


 
Posted : 23/06/2009 9:38 pm
Posts: 31075
Free Member
 

what a decent bunch of people.

You're still new aren't you?!

[JOKE]


 
Posted : 23/06/2009 9:45 pm
Posts: 50252
Free Member
 

Yep, that's Clive! Top chap!

RDA are Riding for the Disabled Association. Horses, not bikes, but great people.


 
Posted : 23/06/2009 9:51 pm
 tang
Posts: 1
Free Member
 

hi there

i work with young autistic people so know this could be such a positive thing. i live near jon whyte (the guy who started whyte bikes) he retired from the company and as far as i remember part of what hes doing is designing specialist equipment for disabled users. i bump into him and his wife on their tandem while cycling to work, sponsored them on some mad race in the arctic (related to the above mentioned work)! dont know how to get hold of him Next time i see him ill be sure to ask. pretty sure hes got a design consultancy now. may be worth some contact (poss via whyte bikes)?
2nd RDA. i work esp with one young woman and horses allot and its a great thing.


 
Posted : 23/06/2009 10:02 pm
Posts: 40
Free Member
 

As said - Riding for the Disabled. It works fantastically as it gives the kids something really positive, and it seems that the horses bring the children on in all sorts of ways. Some start unable to hold the reins or sit on the saddles, but with perseverance they develop the ability to do so. It has great results on their whole lives.

http://www.rda.org.uk/


 
Posted : 23/06/2009 10:34 pm
Posts: 0
Free Member
 

I've had a lot of involvement with our local Special Adventure Playground,where a few autistic children attended. They have some great trikes there,designed and built by the late,great George Longstaff. Thankfully,they are still making bikes and trikes.Got to be worth a phone call. (Longstaff Cycles) I will look for their contact details.


 
Posted : 23/06/2009 10:44 pm
Posts: 1
Free Member
 

mrs julian knows a rather successful cyclist who is also teaches autistic kids (hers are older and speaking/reading ones but her colleagues teach non-speaking/signing kids). if she gets any pointers from her, i will pass them on.


 
Posted : 23/06/2009 10:56 pm
Posts: 8396
Full Member
 

Hi LoulaBella,
my niece has had a few issues in the past, having Noonan's syndrome. Specifically troubles with balance and her mind wandering off the task in hand. We were able to manage with a trike, but with an adapted seat with seatbelt so she was unable to fall off. Before that it was a trailer and she has progressed to a regular adult trike. There are a lot of weird and wonderful vehicles out there from tandems to rickshaws to cargo bikes which might be worth a look, some of which aren't ridiculously priced (everything is relative on this site, many people on here have bikes worth thousands) since they aren't full custom jobs. Have a look at this from ebay, there are some handy links to manufacturers sites in the description

[url= http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&Item=170347045102&Category=33503&_trkparms=algo%3DLVI%26its%3DI%26otn%3D2 ]Dutch cargo bike[/url]

Also have a look at the Mission Cycles website, even if they don't have the answer, they will be worth talking too as they have seen most of the possibilities and might point you to the right person. Good Luck.


 
Posted : 23/06/2009 11:02 pm
Posts: 0
Free Member
Topic starter
 

Thank you soooooo much. This looks perfect for us, im so excited and smiling happily. Everyone has been so helpful. I also think the Big Bike Bash looks ace and shall be purchasing tickets directly!

http://www.missioncycles.co.uk/disdetail.asp?Products_Action=Find(%27ProductID%27,%27216%27)&Products_Position=FIL%3ACategory%3D%27Piggy%27ORD%3AABS%3A3KEY%3A216PAR%3A

Not sure how to make that link a wee bit smaller
I think we will go for one of these!


 
Posted : 24/06/2009 10:19 am
Posts: 0
Free Member
 

just a thought but you may get some advice from some of the more established disability sports groups especially the Uphill Ski Club. Probably a good way of getting in contact with groups who encourage such things and parents who involve their children in sporting activities. One of my aunts was very involved with that group (she has cerebral palsy).

oh it's not called the uphill ski club anymore http://www.disabilitysnowsport.org.uk/


 
Posted : 24/06/2009 10:27 am
Posts: 0
Free Member
 

LoulaBella,

My son is 4 and is autistic, but has shown interets in balance bikes, but pedaling seems a bridge too far at the moment, either that of he prefers to tur the bike over and spin the wheels...

Couple of things:

1: There is a meeting for parents and children wih autism at the [url= http://www3.hants.gov.uk/the-aviary-cc ]Aviary childrens centre[/url] in Eastleigh this saturday morning. Just a chance for those who are directly involved, to share and learn together, and not feel alone.

2: I am intending to get some bikers together to ride the South Downs Way for the National Autistic Society in early July, and will just say, the more that want to do it, the more we can raise!

Happy to talk if it helps.


 
Posted : 24/06/2009 10:44 am
Posts: 36
Free Member
 

another vote for RDA - my mum used to chair/run the Cotswold RDA at various times ofver the last 35 years (her sister had Downs and loved it there).

There's a guy in my parents village who takes his autistic 15 year old son on a tandem a lot. He seems to really enjoy it despite normally having great difficulty in public/noisy/open environments.


 
Posted : 24/06/2009 10:52 am
Posts: 4
Full Member
 

Hi

A subject very close to my/our heart. My son Matthew has a diagnosis of Aspergers syndrome, part of the ASd range.
I've tried Matt on bikes and although he can ride the steering and pedalling/ braking is completely lost on him.
Recently we obtained aplace at our local RDA center in Llanfynydd, only couple of miles from us and he has taken to it. They have enrolled Matt on the vaulting activity and he loves it.

Cant say enough good things about the staff.

As a dad who loves mountain bikes I cannot express the frustration of not being able to intrest/involve my son in my hobby


 
Posted : 24/06/2009 11:04 am
Posts: 0
Free Member
 

Hi smartay, I foud my son the same, until he was amoungst his peer group locally, who are now riding without stabalisers. You can imagine how my heart sank, knowing how much more of a challenge it is for Nicholas, but seeing his friends ride has given him a renewed enthusiasm for bikes, and he enjoys being on the bikes now, which is a major step forwards! I think a balance bike might help, as movement is up to him, which seems very important. I can't help thinking that there has to be some kind of a process that I can employ to help him to enjoy bikes.


 
Posted : 24/06/2009 11:26 am
Posts: 11937
Free Member
 

I've dropped Clive a link to this thread via Twitter


 
Posted : 24/06/2009 11:28 am
Posts: 0
Free Member
 

I've nothing to add to this thread other than I am continually amazed at the depth of knowledge and experience here on STW.

kudos to all of you.


 
Posted : 24/06/2009 12:50 pm
Posts: 785
Full Member
 

As per AndyRT and Smartray, my 10 year son is also aspergic. We had Jordan diagnosed very early on ( Special needs statement by the time he was 4).

Jordan is the most clumsy bugger you could even hope to meet, trips over fresh air, can't catch a ball if his life depended on it, and his mind wonders off anthing unless it's his core interests, which this year are the Titanic, and Indiana Jones movies/ games. But, **** me, put him on a bike and he loves it. ( apart from uphills) He rides really well.

As per the other guys, it just took him a bit longer to master. He had it cracked by he was 6 , his younger sister was stableizer free a good year earlier. Just give them a bit more time and you will be amazed.

LoulaBella, my mates at work, his daughter has MS, and rides in a three wheeler. Next time I'm in, I'll grip him about where he got it from. ( but suspect it was via George Longstaff)


 
Posted : 24/06/2009 1:48 pm
Posts: 493
Full Member
 

My bosses wife can't cycle comfortably on normal bike so they have a half recumbant. In know that it's used to take his grandchildren to school but not sure if its kiddy cranks attached or if there's enough range in the standard adjustment for it. This ones called a Periscop and I think the replacement for it is called a Pino. Much more socialable form of tandeming in some respects as you can talk face to face more easily.
Not cheap but it might offer some inspiration. See picture here with the ex mayor on the front.


 
Posted : 24/06/2009 2:15 pm
Posts: 20
Free Member
 

My oldest son doesn't have Autism but is severally disabled. Making sure he is part of our family activates is very important to us. We raised money for his school to buy one on these, which we borrow at weekends. Would probably be a bit more than you need as it takes wheelchairs, but goes to show where there is a will there is a way.

[img] [/img]

I am however considering get something like this, if it can be adapted for him.

[img] [/img]

Keep looking for a solution, its usually out there and from my experience its worth finding to see the smile on Thomas's face 😀


 
Posted : 24/06/2009 2:40 pm
Posts: 13292
Free Member
 

i saw one of those wheelchair/trike thingies the other day.

i also spotted this sometime last year

[img] [/img]

[img] [/img]

[img] [/img]

this was in germany. no idea who manufactures the parts/puts the bike together.


 
Posted : 24/06/2009 3:00 pm
Posts: 11937
Free Member
 

Company Of Cyclists, based in York, might be able to help: [url= http://www.getcycling.org.uk/specialneeds.html ]http://www.getcycling.org.uk/specialneeds.html[/url]


 
Posted : 24/06/2009 3:41 pm
Posts: 0
Free Member
Topic starter
 

Im so over whelmed by all these wonderful posts!


 
Posted : 24/06/2009 3:48 pm
Posts: 0
Free Member
Topic starter
 

Hey AndyRT,

I would be totally up for doing a ride to raise some money for Autism!
We were thinking of doing a ride next year from Hampshire to Cumbria if anyones interested.
My email address is visible on my profile if anyone wants to drop me a line!


 
Posted : 24/06/2009 3:52 pm
Posts: 31075
Free Member
 

Absolute stars the lot of you. Great level of compassion and constructive input on this one.

I know little of your sons condition. I have a client who teaches autistic children - an incredible and patient woman and have an acquaintance with an autistic child. Sadly, I've not come into contact with these kids enough and feel I'd like to know more.

Best of luck to you in your quest to get him on a bike.


 
Posted : 24/06/2009 6:01 pm
Posts: 50252
Free Member
 

This thread makes me smile.


 
Posted : 24/06/2009 6:27 pm
Posts: 0
Free Member
Topic starter
 

Do you think there is any chance of the lovely Singletrack mag running an article on special needs riding/those who work in that area/and or custom bike builders companies etc? It seems there is a huge need to get the word out there that hopping on a bike isnt as straight forward as you think it is, but that it is POSSIBLE.
Go on Singletrack you know you want too.....
Some pics of Joel
http://www.flickr.com/photos/31010851@N08/?saved=1


 
Posted : 24/06/2009 7:35 pm
Posts: 0
Free Member
 

I have an Autistic Son and he loves going for his rides with RDA on Saturday mornings it fills him full of confidence he loves to trot and do various exercises and the girls/ladies who run it are brilliant, as he attends a special school they introduced him to RDA and we looked out for extra classes. He is not that keen on riding bikes however I do try and give him gentle nudges now and again into having a go, he gets spooked and his coordination is a bit awry so I don't want to put him off by pushing him unnecessarily.

I have taken him up to Llandegla with the rest of my family for walks and he does not like it because of all the bikes, now his speech it coming on hopefully we can find out more about what it is about the bikes that makes him uncomfortable. However is common for people with ASD not to like crowded or busy places. Saying that he loves centre parks and is not bothered about bike there, so its a bit of a mystery in some respects.


 
Posted : 24/06/2009 7:55 pm
Posts: 3196
Free Member
 

Velovision did an issue dedicated to special needs cycling. Might have some useful info for you

http://www.velovision.co.uk/cgi-bin/show_comments.pl?storynum=559


 
Posted : 24/06/2009 8:05 pm
Posts: 126
Free Member
 

MicArms wrote:
"Jordan is the most clumsy bugger you could even hope to meet, trips over fresh air, can't catch a ball if his life depended on it, and his mind wonders off anthing unless it's his core interests, which this year are the Titanic, and Indiana Jones movies/ games."
My God, that sounds exactly like my son Alex!
We started him off being pulled in a buggy behind my bike, then seatbelted into a child seat behind my saddle, then his own bike with stabilizers.
He was almost 5 before he wanted the stabalizers taken off.
Then we let him coast down grassy hills so he learned balance and by the time he was 5 he was riding.
When he was 6 I took him to Vancouver's North Shore (the easist trail) and he still brags about that.
Lotsa patience, lotsa time, losta love and eventually it came around.
Good luck.


 
Posted : 24/06/2009 8:54 pm
 Dibs
Posts: 0
Free Member
 

Hi,

Not sure if some of these types of products are of any use to you

http://www.pashley.co.uk/products/robin.html

Cheers

Dibs


 
Posted : 24/06/2009 9:52 pm
Posts: 0
Free Member
 

Bikes
Compagnon
Kynast mobilty 3 RAD
Quetzal Cycle

Organisations that know stuff
www.Quest88.co.uk
www.Encycleopedia.com


 
Posted : 25/06/2009 1:09 am
Posts: 4
Full Member
 

I've just read the remaining posts on here, do you thimk autism is more wide spread now or do you think the diagnosis has improved.

Matt had his diagnosis as he moved from infants to juniors. He now attends a special unit at a local school. He has also been accepted at a local secondary comprehensive with support staff/ unit.

The bike thing may come overnight, Matt could read or write until he was 9 years old although we tried constantly to get him to read, then he started reading and writing stories. it was if he had no intrest but the ability was always there!

"Flippinheckler" you mght of seen Matt and myself at Llandegla walking a black lab, I use it as away of trying to encourage the bike intrest, but I think the hot chocolate at the end of the walk is the real bonus for Matt


 
Posted : 25/06/2009 10:15 am
Posts: 0
Free Member
 

Yet again STW proves what an amazing place it is.


 
Posted : 25/06/2009 10:26 am
Posts: 785
Full Member
 

smartay - Member

I've just read the remaining posts on here, do you thimk autism is more wide spread now or do you think the diagnosis has improved.

Matt had his diagnosis as he moved from infants to juniors. He now attends a special unit at a local school. He has also been accepted at a local secondary comprehensive with support staff/ unit.

I'd go with better diagnosis. I can think back to when I was at school 70- mid 80's, about 3 or 4 kids who were classed as biffers by the teachers. Only now with hindsight I can say they were on the higher end of the ASD. We just had Jordan's annual review this morning, and now looking to the move from primary to secondary. However due to the location we are looking at either from current primary to secondary, or current primary, to middle, to high.
All three schools have autistic bases, with appriorate staffing levels and TA support in the mainstream classrooms.
Again, going back 20 -30 years it seemed to be that all special needs children were all lumped together out of the way. Where as now, inclusion/ intergration is the main thing. ( providing it's in the child's best interest)


 
Posted : 25/06/2009 2:08 pm
Posts: 11937
Free Member
 

We (mainstream 6th form college) are getting 7 (I think) students who are on the Autistic spectrum starting in September. That's 0.7% of our intake for the year.


 
Posted : 25/06/2009 2:34 pm
Posts: 0
Free Member
Topic starter
 

Can I just say that me and my whole family are so touched by all the wonderful posts.
Yes its bloody hard looking after Joel and the amount of money you get from a carers allowance is minimal.
Comparatively the huge amount of love and support that family, friends and random strangers show you is amazing.
Joel is in an amazing special school, in a class with 6 other autistic boys. Im looking forward to getting him out on that bike with the wind in his hair and the sun (possibly driving rain knowing U.K weather)on his face.
If you have a disabled child and fancy dropping us an email, we would love to organise some sort of social bike orientated gathering. My email is on my profile.
Love LoulaBella x


 
Posted : 25/06/2009 9:24 pm
Posts: 13
Free Member
 

Hi LoulaBella, my 11 year old son Alf has Asperger's Syndrome and ADHD. We've gone through a lot of stress and confusion in the last decade but due to ongoing professional help and medication (for our son!) our lives are on a more even keel these days. Anyway, it's been a long journey so far and his/our biography is too long and complex to chart in one short forum posting.

Andy RT, who probably lives near you, mentioned the possibility of doing a STW sponsored bike ride for the NAS (who've helped us no end) sometime this summer. My personal preference would be a 24hr South Downs Way Winchester to Eastbourne. But whatever, any effort that supports The National Autistic Society and parents/carers and people who live with autism has got to be worthwile. Andy RT drop us a line if you've any further ideas on doing this ride.

Peace and love to all touched by autism.

Rich.


 
Posted : 25/06/2009 9:47 pm
Page 1 / 2