Is this autism? How can I help?

[kareng]

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Oh no! Moderator Muck Up! I hit the edit button instead of quote! SORRY!!

[PeterPan]

Girl autism can look VERY different from how it presents in boys,and there are (depending on who you talk to, what site you look at) 20-80 genes leading to it. Clearly she has some developmental delays, some social communication difficulties, some sensory processing difficulties, and clearly the difficulties together are significant enough that they are affecting her across domains including her ability to hold a job. 

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile This article might help you get started. Also you might look for a psych who works with (counsels) adolescents and adults on the spectrum. It's not an unheard of situation, and it would put you in the position of minimizing $$ spent on diagnosis (which is really a slight question here) and get you moving forward on the question of whether there are things that can be done, skills she'd like to have, resources for problem solving she'd like to have access to, etc..

It would be nice if she could find a non-stressful paying job, just so she has the self-reward of knowing she's valued. I agree with you cashier does not sound like a good fit. 

The getting out in the community part is a challenge. She might need to connect with the autism community or someone she's friends with. My ds goes to travel clubs that help him get out, but they sort of pan out in high school. I think you need to get plugged into community resources and see. I agree recreation, leisure time, being able to go out and do things are a BIG DEAL. It sounds like she is having significant sensory issues, maybe anxiety, and might benefit from putting options on the table. Meds, maybe a couple sessions of OT with someone who could help you problem solve, find a social skills group for young adults, etc. etc. 

Some of the tags stuff and sensory can be from retained reflexes, which are actually treatable if she wants that option. 

So yes it can be, and yes if there are resources in the community it would be nice to connect. In our area I have to drive about an hour to get to those groups. You don't actually have to be diagnosed to participate, so don't let that hold you back. She's over 18, so diagnosis isn't so nitpicky. They're just going to sit and talk with her for an hour or two and start to sort it out. They can run the ADOS, yes. May or may not be informative, depending on her level of coping skills at this point. But that's why I was saying look for someone (psych) whom you'd like to CONTINUE talking with to work on problem solving and growth. You're not needing a $$$ neuropsych eval at this point or something.

[Guest]

I'm of the, it's better to know, camp. I think it helps the individual understand themselves and past challenges they may have had to face, better, while at the same time may give the opportunity to see areas of strength in a new light. It also helps family members and others in the individual's circle to understand him/ her better, which can help with acceptance. That is an entirely personal opinion though and we are all different in how we view things and what we feel is best in our own situation! 

If you are interested in testing, I looked it up to see how adults are evaluated and found you this. In it, the neurologist answering the questions mentions the fact that current testing is geared towards children. He also discusses current methods of evaluation for adults. 

https://www.autismspeaks.org/blog/2014/07/25/getting-evaluated-autism-adult-where-go-who-see

I did read somewhere that they are trying to come up with a test specifically for adults (it is mentioned in the article linked as well) and they were asking for volunteers. I am not sure what stage that is at though. 

There are books written by females on the spectrum (I'm sure they are likely available as audiobooks as well) that she could also read and see if she can relate. If you are interested I can suggest a few. There's also a book titled, Different... Not Less by Temple Grandin. Some of the stories can be challenging to read and it is not a book I would recommend for your daughter. It could be something you could read though. It could help you see how people on the spectrum, diagnosed as adults, have coped with the challenges, and perhaps give you some ideas. 

You mentioned her personal interests. Would she be able to try some college or community courses, maybe? This can give her opportunites for socialization. Since these are for adults and based on personal interest the people there may be a lot more accepting and understanding compared to the young-people social scene out there. If she has an interest in art, it may lead to a career involving art. Perhaps teaching young children in community style programs? Living in Canada, I am not sure how things work in the US. I am just trying to give you some leads to consider. 

[MerryAtHope]

On 7/17/2018 at 12:24 PM, kareng said:

When they asked her to do it again this year, she cried again and said she'd been having nightmares about working there again. I just couldn't see making her do it just for the sake of doing it.  So she is not working there.  Does anyone have any ideas on how to get her out in the community in a way that will be stretching but encouraging, building confidence for her?

 

Aw, poor girl! Does she like animals--what about something like volunteering at an animal shelter? Or having her own pet-walking business? Greeter at Walmart, or helping to clear tables at a fast-food place could be possibilities too (they often will hire someone for busier shifts to just clear/wipe tables, sweep or mop etc... and managers are often used to working with people who might have some special needs--keep an eye out for places that might seem to have better management. She'd be in the AC that way too.)

Sometimes the library has volunteer positions. Does she like the elderly or shut-ins--could she partner with someone to help with a meals on wheels program?

[Mrs. Tharp]

Based on what you are saying, autism is a possibility.  There are tons of resources online and more and more women with autism are speaking out about their experiences. A diagnosis could open up more resources and avenues for support, such as autism-specific counseling.

Volunteer work that might help her: library, food bank, animal shelter, senior center, hospital. If she likes art, maybe an organization where she could help kids, seniors, etc. with art projects? 

[Tanaqui]

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Is it possible for some people to have some of the signs of autism and not all of them?

 

Certainly! Such a person might be part of what we call the broader autistic spectrum. Of course, as noted, female autistics don't always look like males.

What you described definitely sounds similar to many of my autistic friends. If she had a formal diagnosis, that would be helpful in so many ways.

[kareng]

Thank you, everyone for your thoughts and ideas.  My dd loves art, animals and books.  She has expressed interest in walking dogs at a local animal shelter so I think we'll start there.  

As to an evaluation, the resources I've read seem to indicate that there aren't any? tests for autism in adults and that most tests focus on boys and therefore many females fall through the cracks (also because they tend to watch and imitate social behaviors).  Are there good tests for adult females that anyone knows of?

I appreciate all your help!

[PeterPan]

ASD in adults is going to vary with the psych. They often want to know about childhood stuff, and really the ability to get that data varies. Also the extent of what they're wanting to make happens varies. If an adult (over 18) just wants to know, then something informal, where they just discuss for an hour and sort it out, can actually be enough. I don't know how far up they'll take it (to how old), but they can do an ADOS, yes. Some psychs will also have their own tools they've developed. (That's NOT run of the mill and something you're likely to find.) So the more official you want it to be and the more paper trail you're trying to generate, the more they're going to want to nail stuff like childhood to age 5, etc. But when you just say can you sit down and get it sorted out, yes sure.

There are no "tests" for ASD yet anyway, not at any age. Like not to nitpick too much (tests vs. questionaires), but the tools/questionares they use are all crap. The ADOS becomes less helpful after a point, because girls especially are going to have learned coping strategies. At that point we're back to exactly what I said, that the psych is going to TALK with them. They're going to go through the criteria and see how the adult is ticking the boxes. 

There's significant work being done looking for biomarkers for ASD. Unfortunately, there are so many varieties and paths that they keep hitting walls. There was just one in the news about methionine and transulfuration pathways. They've looked at tryptophan. They keep trying. There are known genes and you can actually run labs for that if you ahve the money to blow. Or do the reverse and get the diagnosis and then participate in the SPARK study.

I think most of the questionaires they use, like the GARS, the ADI-R, etc. age out at maybe 18. Your dd *might* be right on that line. But really, for adults, they just talk with you. If you go to someone who has worked with enough spectrum and worked with enough adult spectrum, it won't be rocket science to sort out.

I will also tell you that these people are going to be slow to diagnose spectrum in an adult. They're going to ask WHY you want to know, and they really mean it. There are consequences, implications, etc. from being diagnosed, and there's also sort of the fallout that you have to deal with, both in the person and in relationships. They're going to ask WHY this is the question, WHY it needs to be diagnosed. It is possible to walk right up to that door and realize you'd rather not knock, that it's ok just to do some coping strategies, get counseling, and move on. And sometimes for an adult it's time and the question really needs to be answered. 

If SHE has the question, it needs to be answered. If it would help her access services or help target counseling better, it needs to be answered. But just be aware that they're actually going to ask that most likely. Getting a diagnosis would have consequences you don't anticipate and can't anticipate. They could be really GOOD!! It's just stuff to talk through with her. Even if she functions young, she's not a little kid any more. You'll want to have that discussion. (Do you want to know, would you rather just have counseling, how would it help, etc.)

[Guest]

This article from WebMD has some suggestions on how to approach it:

https://www.webmd.com/brain/autism/adult-diagnosed-on-autism-spectrum

There are actually quite a few adults that have been diagnosed after having their child diagnosed. 

[kareng]

Wow.  So much information!  Thank you for the thoroughness of your post. I especially appreciated the part about telling me that they would ask WHY? WHY does she want to know (at this point).  In thinking this through, I'm not sure if she needs any confirmation, at least not official confirmation. When I first started to "see" some things, I talked with her about it.  She was relieved to hear that there was something different about her.  It was like she could relax for the first time, not having to try to be something she's not.  She knew she was different all along but now she knows she is and it is freeing. :-)

 

On 7/28/2018 at 9:07 PM, PeterPan said:

ASD in adults is going to vary with the psych. They often want to know about childhood stuff, and really the ability to get that data varies. Also the extent of what they're wanting to make happens varies. If an adult (over 18) just wants to know, then something informal, where they just discuss for an hour and sort it out, can actually be enough. I don't know how far up they'll take it (to how old), but they can do an ADOS, yes. Some psychs will also have their own tools they've developed. (That's NOT run of the mill and something you're likely to find.) So the more official you want it to be and the more paper trail you're trying to generate, the more they're going to want to nail stuff like childhood to age 5, etc. But when you just say can you sit down and get it sorted out, yes sure.

There are no "tests" for ASD yet anyway, not at any age. Like not to nitpick too much (tests vs. questionaires), but the tools/questionares they use are all crap. The ADOS becomes less helpful after a point, because girls especially are going to have learned coping strategies. At that point we're back to exactly what I said, that the psych is going to TALK with them. They're going to go through the criteria and see how the adult is ticking the boxes. 

There's significant work being done looking for biomarkers for ASD. Unfortunately, there are so many varieties and paths that they keep hitting walls. There was just one in the news about methionine and transulfuration pathways. They've looked at tryptophan. They keep trying. There are known genes and you can actually run labs for that if you ahve the money to blow. Or do the reverse and get the diagnosis and then participate in the SPARK study.

I think most of the questionaires they use, like the GARS, the ADI-R, etc. age out at maybe 18. Your dd *might* be right on that line. But really, for adults, they just talk with you. If you go to someone who has worked with enough spectrum and worked with enough adult spectrum, it won't be rocket science to sort out.

I will also tell you that these people are going to be slow to diagnose spectrum in an adult. They're going to ask WHY you want to know, and they really mean it. There are consequences, implications, etc. from being diagnosed, and there's also sort of the fallout that you have to deal with, both in the person and in relationships. They're going to ask WHY this is the question, WHY it needs to be diagnosed. It is possible to walk right up to that door and realize you'd rather not knock, that it's ok just to do some coping strategies, get counseling, and move on. And sometimes for an adult it's time and the question really needs to be answered. 

If SHE has the question, it needs to be answered. If it would help her access services or help target counseling better, it needs to be answered. But just be aware that they're actually going to ask that most likely. Getting a diagnosis would have consequences you don't anticipate and can't anticipate. They could be really GOOD!! It's just stuff to talk through with her. Even if she functions young, she's not a little kid any more. You'll want to have that discussion. (Do you want to know, would you rather just have counseling, how would it help, etc.)

 

[PeterPan]

That's an interesting point if it's *your* question and not hers yet. You can continue to talk it through and explore whether an official diagnosis would help (accommodations, opening doors to job services or transition services, etc.). You can also explore the things you'd like to make happen with or without a diagnosis. You don't have to have a diagnosis to pursue counseling, CBT, etc.

It's interesting that she's so comfortable with it and got there so quickly. It might be something that she kind of grows into with time, as she has more time to think and ask questions.

[kareng]

On 8/1/2018 at 5:05 PM, PeterPan said:

That's an interesting point if it's *your* question and not hers yet. You can continue to talk it through and explore whether an official diagnosis would help (accommodations, opening doors to job services or transition services, etc.). You can also explore the things you'd like to make happen with or without a diagnosis. You don't have to have a diagnosis to pursue counseling, CBT, etc.

It's interesting that she's so comfortable with it and got there so quickly. It might be something that she kind of grows into with time, as she has more time to think and ask questions.

Yes, it is an interesting point -- that's it 's my question and not hers.  I hadn't thought about it until you wrote the above.  I have always had a need to understand about life, about what makes people tick, especially about myself.  For my dd, when she and I started talking about autism and Asperger's, it's like the burden of life fell off of her. She no longer has to understand it all out or decipher why she's different than her friends or than the "normal" young person her age.   I have told her numerous times, that we are in this together and we'll figure it out. Just knowing that she might be autistic or be an Aspie seems to be enough for her, for now.

[Rosie_0801]

Anyway, I am interested in how to help her socially so that she can feel more confident and less frightened of "what's out there" , of whatever the future holds.

Welllll, the three things I can think of are:

1. Skills that she feels competent in.

2. Faith that she is a decent human, which she probably is because she puts effort into it.

3. Acceptance that when people suck, it's them, not her.

[kareng]

1 hour ago, Rosie_0801 said:

Welllll, the three things I can think of are:

1. Skills that she feels competent in.

2. Faith that she is a decent human, which she probably is because she puts effort into it.

3. Acceptance that when people suck, it's them, not her.

Thanks, Rosie. I like those 3 things AND I especially like one of your quotes,""I believe in homeschooling because I don't think people should be mass produced." - Someone with a Great Mind"

That's why I homeschooled my dd :-)

[PeterPan]

The Social Thinking site has a pretty extensive book list for teens/young adults, and at least in our library system a lot of them are available via interlibrary loan. You might try dribbling them at her, once a month, picking a book to read together and discuss. 

[kareng]

On 8/4/2018 at 9:14 PM, PeterPan said:

The Social Thinking site has a pretty extensive book list for teens/young adults, and at least in our library system a lot of them are available via interlibrary loan. You might try dribbling them at her, once a month, picking a book to read together and discuss. 

I have never heard of the Social Thinking site. I am assuming it's just what it sounds like? A place to help folks with social situations... I'll have to check it out.

[PeterPan]

Michelle Garcia Winner's stuff. Tons there for you...