Not sure what to do,

[Ruby2010]

Hi.  My name is Ruby.  I am 21 years old and I have autism, as well as generalized anxiety disorder and PTSD.  I live by myself but right now and do pretty well, but I need a LOT of assistance from my boyfriend, who lives a town over, because there are so many things I can't do by myself.  I have a really hard time in public because of sensory overload issues and at present hold onto my boyfriend and stare at the ground while he leads me around everywhere.  I manage to walk around the neighborhood and get to classes and a bit of shopping myself (with difficulty but it is not utterly impossible), but more extensive trips are impossible.  I don't drive and I can't take the public transportation alone because of sensory and anxiety issues, so any time I have to go anywhere my boyfriend has to take the bus to come see me and then accompany me to wherever I need to go.  I cannot remain calm by myself, I become over-stimulated and get panicky and have to immediately get off the bus, and sometimes it happens in other public places as well.  I manage to not freak out, but mentally I shut down and need to be led away-- right now that is what my boyfriend has to do.  And with work and school, he is really not in a position to be my babysitter, and I don't want him to be.

My doctor suggested the possibility of some kind of a service animal and I have been researching the idea the past few months and am intrigued.  I have always done extremely well with animals, they bring out the best in me and dog training is actually one of my special interests (people with autism tend to have intense interests and spend hours researching and developing those interests.)  I have owned and trained a dog before, and a horse, and I have extensive experience handling dogs at my local humane society, in exercising and basic training.  With a dog around, I don't feel autistic anymore.  Sensory information is easier to process, I feel safe, I feel happy, and I feel SECURE.  I can DO things when there is an animal with me.  I don't know what it is, but it's like suddenly a light clicks on inside me and I can function.  The doctor mentioned that if I did become too overwhelmed with sensory stuff the dog may be able to lead me out (which is what my poor boyfriend has to do now), and alert me to repetitive behaviors.  That seems like it would be a great help in empowering me to handle things without needing my boyfriend to be at my beck and  call.   

I do not pretend to be incredibly informed about SDs (that is why I am here!) and am not making any rash decisions, so if I've said something moronic please be gentle with me. 

At this point I am still just in the information gathering stage.  I tried to see what I would need to do to get a dog, I understand the medical paperwork aspect part and that seems fairly manageable and as straightforward as any disability process is (ha!).  But I don't know how to actually get an animal.  I've looked around and so far all the organizations I've found only place dogs with children, and they all require fundraising tens of thousands of dollars.  How is an autistic adult going to have the social connections or abilities to fundraise that much?  I don't have familial support, and I certainly don't have 10-20k lying around.

So now I don't know what to do.  Should I just give up?  I looked into ESAs and I think I would get a lot of benefit from that at home, but that wouldn't help me to get around town by myself like I need to.  I don't know if there are organizations or options I am missing, or if this is just something I shouldn't be considering in the first place.  I don't know.

I know this was a very long post and I apologize.  I can't help p being verbose sometimes.  I would appreciate any guidance.  Just like I said, please be gentle, I know I am uninformed and don't pretend to know what I am doing here. >.<

[Kirsten]

Hi Ruby,

Relax.  We have several members on the spectrum and are used to things like being verbose and having subjects of intense interest.  You'll fit in fine.

You've discovered a dirty little secret about autism service dogs, which is that programs don't tend to train them for adults.  There have been recent discussions of this on the forum.  We have one member who is working on going through a guide dog school and adding on her own tasks, and another who is owner-training.  We have other members who have already owner-trained their own autism service dogs.  So the resources are here.

PS  My dog is named Ruby too.  I picked the name for her so it's one I'm rather fond of. 

[Ruby2010]

It is really unsurprising that they don't train them much for adults.  I was only diagnosed last year (which is really shocking in retrospect), and the first thing I did when I got home was start looking up books and resources and it seems almost everything is for children, and what isn't seems to either be directed toward autistic men or neurotypical women dating autistic men.  You'd think people believe we all die off before we become adults or something.

Owner-training is an intriguing idea, but something I know nothing about.  And I'm not sure how I would pull it off given that I don't think ANY of the apartment complexes around here allow non-service dogs, so I don't know how I would get a dog in the first place to train it to become a service dog.  Maybe if it were an emotional support animal?  I dunno.  My knowledge of all this is still pretty murky, I've been poking around the last several months trying to learn about it and there is a lot to take in.

[Carey]

I can't really offer a lot of advice but I did want to welcome you to the site. I know that even though I don't really have any thing specificly helpful to say there are several people on this site that will have lots of good information for you. I can't wait to read your future posts

[Rovingrebel]

For everyone who is under 25 (program's limit not mine) there is a small program in eastern OR That may be worth checking out for an autism service dog http://www.canine-angels.org/index.html. I met someone where I work who is being partnered this June and from a distance they seem intriguing. Sometimes small programs are more willing to think outside the box.
just and FYI not an endorsement

[labs4ever]

Welcome RUby!   
I think you are thinking  correctly about alll of this.   Going slow with it is a very good idea.    You could most defintily  get a dog  to be an ESA and then  have that dog be a SD candidate.   I have  anxiety disorder too and my mom and I think I am on the spectrum although I haven't been diagnosed.   It is just one of those things taht seems to fit.   How did you get diagnosed? 
My dog Sophie is owner trained and does  seizure alert and response, guide work and wheelchair mobility work.  She is my fifth SD, my first four being program dogs from guide dog school.  But since I can't walk... and don't want to use an electric whelechair I can't get a  guide dog that way.  So I owner trained.   This forum has a lot of good information and people on it.  If you have trouble finding info on a specific topic feel free to ask where info to that might be and someone can fidn a link foor you!   IMO this is definitley the best and  most honest places about the world of SD's.   

[Spectrum]

Welcome!

I'm also autistic and owner-training my first service dog. Dog training and SD are also my main special interest 

If you have any questions, ir just want to talk, feel free to PM me. I think you have to have 5 posts before private messages are enabled, but you can ask questions here too until then.

I found the same problem you did - there simply aren't many places even willing to consider training an autism SD for an adult, and the places that do don't train everything that's needed.

My blog is linked in my signature - there's a lot of stuff there if you want to take a look. It's mostly a training log, but I include other stuff from time to time too.

My big goal some day is to open a program for autism SDs for adults, with a comprehensive set of tasks including guide work. But that's probably 6-10+ years away (I still have 2 grad programs to get through).

[Ruby2010]

I was diagnosed by a team of psychologists that specialize in autism.  There is an autism research center at my university and I approached them about testing.  I participated in one of their studies and as such only had to pay for the psychologists to draw up the report, the testing itself was free.

That Canine Angels program looks promising, though from their website it looks like the dogs they train for autistics are "at home helpers," which is useful but doesn't help me get around.  But I could contact them and see what more information I can gather. 

My mom doesn't sound pleased with the idea of an SD or an ESA and I am wondering if she will come around, I just mentioned it to her yesterday.  She's basically told me that if I get one I won't be allowed to come back home anymore.  I didn't intend to, when I graduate in a few months I'd intended to get an apartment, but if I ever got into trouble it would be a problem if I couldn't go home.  So I guess I can't responsibly have any animals at all unless she comes around to the idea.  I wasn't planning on doing anything very quickly anyway, I have to graduate and get my job first and figure out what my situation is going to be, but this is rather discouraging. 

On the other hand, I mentioned it to boyfriend today and he really likes the idea.  He says he is basically my service dog at the moment and it would be nice to be relieved of those duties so he can just be my boyfriend. 

[Rovingrebel]

Many families are resistant to the idea of an SD because it makes you and your disability standout more among many other common reasons.

[Kirsten]

Actually we call them service humans (SH).  So feel free to get him a vest of his own. 

Family is often resistant to the idea.  Some come around when they see the benefits, and some never do.  I hate to say it, but I suspect your situation may be rougher because your diagnosis came late in life.  That either means you compensate well, or your parents were in denial about the issue.  Either one would tend to suggest they may be more resistant to any sort of treatment or approach to managing your symptoms.  But I don't know your parents, so I'm just taking a wild guess on that.

[state_of_nowhere]

My girlfriend says the same thing your boyfriend does! Sometimes, she'll even "woof" at me when she does something to help me out.

My family is not 110% supportive about the service dog idea either, but one thing I've learned about them is that they tend to come around after awhile.

[Spectrum]

My dad's always been supportive of it, but I've just recently had this assumption affirmed when I asked him outright what he though.  It took my mom nearly a year to even believe that I have autism (I was diagnosed 2 years ago last month, when I was 20), but once it clicked, she was all over it. I don't know exactly how receptive she is to a service dog, but I know she at least knows minimally the plans I have. I suspect that if she doesn't already approve, she will by the time she sees Logan working and what he does for me. Surprisingly, she is supportive of my dad training himself a service dog (he has multiple disabilities), so I don't think she'll be too harsh about me having a service dog. She was supportive of Gavroche being an ESA once she found out.

I also wanted to add I'm having to move back in with my parents next month after being on my own for 2 years. I now have 2 dogs (my ESA and my SDiT), and though she didn't want Gavroche when I wanted to find a way to adopt him (before I knew I could move out and have him myself...it's a long and complicated story) she adores him now and welcomes him. We're going to have to do some dog juggling, but we'll figure it out. They've made it clear I'm always welcome back home, even though that definitely wasn't always the case over the last 2 years.

[Sheenar]

I am also on the autism spectrum and was diagnosed my freshman year of college at age 19 --I am now 25. My mom wasn't good at following up with specialists, so it was my aunt that finally took me to get a diagnosis of my physical disability so I could get accommodations at college --the autism was diagnosed secondarily. My mother was against me getting a SD, but gradually came to accept it once she saw how much Pebbles helped me and how greatly reduced my falls were. She still does not accept that I have autism, however.

Since I have a mobility disability/neurological disorder in addition to autism, my first SD came from a program. Pebbles, on her own, picked up on when I would start to shut down due to overstimulation --and would lead me to a quieter place to recover from the meltdown. She'd also lead me to the edge of a huge crowd so that I could walk easier without risking being knocked over.

I am currently (basically) owner-training by second SD with the help of a trainer friend of mine who has trained many SDs. Handsome is being trained in typical mobility tasks (retrieval, tugging off socks/jackets, automatic door buttons, help with laundry --and bracing/balance work when he's old enough) as well as autism-related tasks like leading me to a quiet place/exit, helping me find the car when I get disoriented and a few other things (we're still refining the list of tasks and figuring out what will be beneficial for me.) I am also hoping that he will learn to alert to my migraines like my previous dog --she would tell me to go lie down before they happened so that they were prevented entirely or greatly lessened --I tend to push myself too much at times. It's exciting --and, even though I had a SD before, I'm still finding there is a TON about training that I don't know yet --and am finding this community to be a wealth of information and support.

I am glad you are here! Welcome! I hope you enjoy your time with us.

[CharlieDog]

I'm also on the spectrum, and though I'm capable of a lot on my own, I still have to have a service human with me too much more than I would like. I'm also currently training my own SD, Enzo is a chocolate lab with some personality "quirks" (she absolutely ADORES people, but she's not too enthused about retrieving ) She's coming along very well now that she's almost three. I need her for some other health problems as well, (balance issues, and such) and while she's a bit too small for brace work, she's learning to stand still so that I can help myself up on her. I don't brace on her, but I do use her to come to a standing position if I fall or have to squat down because of dizziness.

Anyway, good luck and welcome to the forum!

[Ruby2010]

My mom is very stubborn.  Part of the reason I was diagnosed so late in life is because I didn't see any doctors besides an allergist and a dentist anymore by age 10 or so, even though I'd already been diagnosed with ADHD, dyscalculia, and depression (and asthma, but the allergist tended to that.)  Back then my symptoms weren't as obvious, they tend not to be in young girls, and they could have been attributed to the ADHD or just being a quirky kid-- it didn't become more obvious until I was in my teens.  Now it turns out I've had some sort of a neuropathy my entire life, IBS, and my doctors are looking into fibromyalgia and hypoactive thyroid, and I've just been living with it all because I've had such limited medical care.

She was in denial for a while once I was diagnosed (when it was "autism" instead of "asperger's" she got really upset, for no apparent reason because my symptoms differ little if at all from an aspie, so whatev!), and now she definitely believes it but kind of distances herself from the idea.  She doesn't want to learn about autism symptoms  and she tends to think since I made it so long I must not be that disabled.  And while there is some amount of truth to that, I am quite high functioning, I still have a LOT of problems that have always been there, they just simply weren't being dealt with before.  And much of my problems have to do with not living at home with her anymore, which I hadn't tried to do until just this past year.  The year I was diagnosed was my first year away from home, so this was the first time I was responsible for driving myself around and getting my own food and everything.  She tends to just accuse me of being lazy.

 I don't think she would care enough about me having an SD in general to raise too big of a stink about it, I am sure she would feel like I am overreacting to my disabilities but I don't think she'd make that her business, but she doesn't like the idea because she never wants another dog to set foot in our house.  Or family dog died a year ago and she says she is done with animals.  So if I got one, I wouldn't be able to visit, and if there were an emergency and I needed someplace to go I couldn't go home.  She flat out said I couldn't have an SD because of this.  I'm not planning on living at home ever again, barring financial catastrophe I shouldn't ever need to, but not being able to visit or stay there temporarily in an emergency is a little unsettling.

It's just frustrating because I feel like she would be fine with it, at least for visits and on a temporary emergency only basis, if she REALLY understood the severity of how much I struggle and she has NO CLUE what I am going through and doesn't care to find out.  I respect her right to decide whether or not she is going to have a dog in the house, but it is rather unfortunate that I would have to rule out something that could help me so much just because of this.  But maybe I can show her some research and help her to understand, we'll just have to see.  There's a good chance I'll be married by the time I could actually be placed with an SD anyway, and then the doors to home are closed forever anyway.  So it is worth it, I think, to proceed with gathering information and figuring out if and how this will work.

What is involved in owner-training?  I am sure it varies a ton depending on the dog, your training ability, and the tasks you are training, but is there any reasonable rough estimate about how long it takes to get a dog ready to be an SD?  Does it have to start out as a young puppy?  Presumably there is a certification process, what is required for that?  Can it just be any dog, could I adopt a shelter puppy?  Or would it need to be a pedigreed purebred kind of dog?  IF this is ever going to happen, it seems like this might be the only way.  I wonder if there are any programs or trainers who could assist me with that and have it not cost thousands of dollars since I'd already have the dog?  How does all this need to work?  As much as I love dog training, the idea  of building a service dog from the ground up by myself is a little daunting.