Been here before. Looking for some advice

[Smithmom]

I'd add the suggestion that you read one of the many, many books out there on what it feels like to have asperger's. Your librarian can point you in the right direction. At one time Temple Grandin wrote the definitive books. But that was years ago. There are movies as well. The best explanation I can offer is that the thought process, values, well everything, is different. As non-aspies we want our aspie kids to follow our thinking and values but it doesn't work. Your thoughts about her having a social life may be an example. She may just not find social interaction to have any emotional value. She may not feel isolated. Her only value to social interaction may be to learn about the video game. As non-aspies we may find her life isolating, depressive, etc. But she may be happy, this may be the way she wants to live.

Please, as others said, don't even consider evicting her. She doesn't have the skills to live outside your home.

Education is always a good thing. But it has to be in a setting and style that is comfortable. Imagine for example being claustrophobic. Being forced to take a class in a closet doesn't result in an education for a claustrophobic. I'm surprised that the school does not offer online classes. Find a school that does. And one that will let her take any class she likes. Its about learning, not about a social life. Ask your library what she can do online through them. Eg Lynda.com?

Anxiety is part of autism/ asperger's. Reading about how it feels to have anxiety may also help you.

She needs to understand herself, the point of therapy. See if you can get her to read some books that she may see herself in. Obviously it has to be her choice. But she will be interested once she sees herself.

Honestly, I think you have a great kid as others have said. She's not an adult at all. She's a teen. I'd start by making her responsible for herself and her actions. That means her own laundry, space, making meals in rotation with others in the house, etc. Also her own actions.

One other very important point about autistics... Everything has to be structured and consistent. Inconsistency creates chaos in every way. So rules must be written down and followed consistently by everyone. Same with consequences. There can be no off the cuff rules or consequences. No emotional outbursts or changes. This is basic stuff for parents of young autistic kids. But it doesn't change unless the kid becomes more flexible and it doesn't sound like yours has yet.

One of Temple Grandin's books was called Thinking In Pictures. You said your child excels at art. I'd suggest courses in photography. Also, mine is also especially drawn to computers. My hypothesis has always been that the computer is a place of order and reason. The result of pushing a button is always consistent. Its structured. The combination of computers and art is graphic design. Also the subject of many courses. Go into any group of computer programmers and you'll find a large number of autistics working in isolation. Let her find her way her way. My opinion anyway.

 

[Elsi]

Smithmom has some great insights and suggestions here. I’d like to second those, with a caveat: she’s going to have to learn how to get out of her comfort zone at some point, in some ways. Maybe that looks like taking 3/4 of her classes online but taking classes with creative components or lab work in person. Or maybe it’s the classes most closely related to whatever field she chooses, so she has a chance to interact with other people going into that field. Maybe it’s taking things slowly, a couple classes at a time, with whatever supports her college offers.

But if we don’t get outside our comfort zones our worlds become too small. Even for Aspies. Temple Grandin is one of my personal heros - I’ve seen her speak live twice and read all her books. She’s phenomenal live. But she wouldn’t be able to get up there and do that, and would not have had success with her books and career, if she never came out from under her bed.

I wasn’t diagnosed until I was well into my career and raising four kids, and I can’t even begin to express what a relief it was to start to understand myself. Whole pieces of my childhood snapped into place and suddenly made sense. And I was able to start finding accommodations for myself that work for me. But I really see my late diagnosis as a partial blessing, too. My family refused to accommodate my differences or see anything wrong with me, and that was incredibly hard. But it also forced me to do things I might not have otherwise, and learn on my own how to exist in a world that didn’t seem to be designed for me. I had some great help along the way - I think I wrote above about my wonderful first boss, who remained one of my dearest friends until his recent death. And I had other mentors, too, who were critical to my success. But I had to be willing to get out of my comfort zone and try new things, and I had to learn strategies for overcoming my anxiety and dealing with the sensory overload.

I had to learn what things to avoid entirely, when to use accommodations to get through things, and when to grit my teeth and power through. Avoiding everything isn’t the answer.

Now I’ve organized my life in ways that are much more comfortable for me. As smithmom pointed out, I don’t need as much social interaction as most - but I do need some. I have a partner who is quiet like me, has her own quirks and understands mine. We live in the country with lots of animals. I work from home now, freelance. I have a closet full of near identical outfits because fashion makes no sense to me and I’d rather not waste the energy thinking about what to wear. I eat the same thing at the same time for breakfast and lunch pretty much every day and rotate through a menu of dinners. Between Amazon and Shipt, I can arrange life so I rarely have to leave our property - and often don’t, for days or even a couple weeks at a time.

But we have friends over regularly, get out to see family and friends, and even occasionally venture into the big city for dinner or a show. I have friends all over the country from my pre-freelance life and sometimes travel to see them.

The things I learned by getting out into the big world, and the connections I made, have been vital to the life I have built now. I have a business because I know people who can give me work and introduce me to others who can use my services. I have to be able to navigate those introductions and present myself appropriately to secure business and build trust. Sometimes that involves in person meetings.

The bottom line is there is a difference between choosing not to do something and not being able to do something. You don’t want your daughter’s world to be constrained by ‘can’t’ even if she ultimately decides she prefers not to engage in some more social or active things. If she stays behind a screen forever, she’ll never know if that’s what she really wants or if that’s just what she feels like she can handle.

So take it slow, give her supports, do it with love, but do pull her out of her comfort zone. I went through a lot of unnecessary pain with my no-supports entry into the adult world that I certainly do not wish on your daughter. I wish I had known more about myself then, and had more support and guidance. But I don’t regret having to learn how to manage my symptoms and reactions and navigate a big wide world with other people. I love having my safe retreat, but I’m glad it has not become a prison of my own making.

 

[BusynMember]

I dont believe all people on the spectrum can do without help and find a career. There are levels on the spectrum. No two are alike. My son was very able to go ro school and had a little group of friends, but he was not interested in college, has no licensed career although he has always worked and is most comfortable talking about videogames and movies. Norhing could change him .... He is who he is and he is my hero. Talking careers to him is boring and the things neuro typicals find interesting, especially socialuzing on any large scale, is again boring to him. Socializing exhausts him. After seeing people he needs down time by himself in his apartment. The stimuli in the world tires him out. What most people who do not have autism find fun like parties and sports, he is not at all interested in. Too noisy. Too confusing. Too overwhelming. Too boring. He makes online friends too, mostly gaming friends. Many autistics of all functioning levels love videogames. I was told that this is because autistics have narrow interests and tend to have a poor imagination. Videogames help imagine for you. Television as well.

My son does work but he also gets SSI and has adult supports. He needs them. There would have been no way to treat him like he had nothing wrong. We pushed him the most we could. At a certain point he would freeze and be unable to perform. He did not talk until he was five and learned normal social skills late. He is still young for his age but he pushes himself. He just has a different idea about what is impotant to him than most neurotypicals.

Autism is a broad spectrum. Some adults never learn to speak and need lifelong care and have low IQs, not necessarily all in one person. Some like my son are bright, articulate and can pass for just maybe having ADHD, but he has a limit on how much he can do before he has to ease out. And his goals are not to achieve in the business world. He doesnt care. We love him for who he is. This is a young man with a heart of gold. Everyone loves him.

Autism, including high functioning, looks different on each individual. Always a deficit in typical socializing is present. Anxiety is a huge part of autism, but it is worse for some than others.

I have no answers. I only know what works for my son. Donna forgot her last name is very high functioning and unusual. More often there are struggles, monetary and work related assistance needed and adult supports required but again they are all different. Very different.

Do I think Drew's daughter is on the spectrum? I think a good doagnostician would probably say yes and in her case the anxiety is off the rails. She is afraid to leave the house and that is extreme and needs intervention badly. Trying to change her to the core in my opinion wont work. But I do believe she could learn to leave the house. She may need a case manager to go with her first. That would mean applying for SSI. I think she would qualify. It is not a bad thing to need some help, even as an adult. This helps my son live happily and gainfully in the community, on his own and he has wide acceptance in our small city. His life, he would say, is good!

Love and light!

 

[Elsi]

I don’t believe all people on the spectrum can do without help and find a career. There are levels on the spectrum. No two are alike.

You’re absolutely right, of course, and I can only speak from my own experience. I guess I’m thinking if her symptoms were not overt enough to get a clear diagnosis by now, she Is likely to be on the end of the spectrum closer to my experience. Or maybe she’s not on the spectrum at all. I know everyone’s needs, experiences and capabilities are different. But I do believe that all of us are capable of growing, from wherever we are, with the right supports given. I just think it’s good to encourage her to stretch her limits and find out for herself what those limits are.

 

[BusynMember]

Sure. My son is still growing. A lot. Every year is better. But he is not interested in career or further school and he never was. He always worked. I think my son is higher functioning than her....I feel she is quite impaired. It could be something else. I personally would want to specifically check for it in her though. Many red flags. But she wont go and it is now her call. Very hard

 

[Elsi]

Sure. My son is still growing. A lot. Every year is better. But he is not interested in career or further school and he never was. He always worked. I think my son is higher functioning than her....I feel she is quite impaired. It could be something else. I personally would want to specifically check for it in her though. Many red flags. But she wont go and it is now her call. Very hard

It sounds like he’s doing great and you’ve done a great job helping him get there! I can honestly say I didn’t really fully hit my stride and feel comfortable with myself until I was into my 40s. I can identify with a lot of what you say about your son. I’ve given myself permission to stop trying to pretend I like parties, sports, or most television. And yes, I so identify with that need to retreat and recover - sometimes for extended periods of time - after doing something that overloads my sensory capacities, even if I truly wanted to do it and enjoyed it. I think we all have to find our own comfort levels and learn what accommodations we need to be successful. I also don’t care about career, as such, in the climb the ladder and chase a fancy title sense. I am very motivated to be self sufficient financially and support myself in my chosen retreat, which has required getting proficient with both hard and soft business skills. But again, everyone’s goals in life are their own.

I think there are a lot of possibilities that impair different people in different ways, and some are easier to treat or overcome than others. None of my kids are on the spectrum, but two have combinations of Obsessive Compulsive Disorder (OCD), anxiety, and depression which were every bit as paralyzing for them at that age. And of course, they are still struggling to find their way, or I wouldn’t be here.

Drew, I’m sorry if I’ve hijacked your thread - I just wanted to share my perspective in case it is at all helpful. Your daughter’s mileage may vary.

 

[BusynMember]

I have the same people burnout and very poor people reading skills. I always suspected Aspergers but am always told no. But since you cant test for it, like you can for diabetes, who knows? I have many signs and learning disabilities too. I have a non verbal learning disorder which WAS diagnosed and is common on the spectrum. I have panic disorder and generalized anxiety. I also know that my values and beliefs and things I consider most important are not the norm. I was known as crazy in my family of origin but think I was just different. My entire family is strange so there is the hereditary factor.

Like you, Elsi, I am different, also not comfy with myself until my 40s and want Drews daughter to succeed as an adult and hope that being different doesnt shame her or hold her back forever. Until you accept yourself, you can feel pretty bad about your life. But all that can change

 

[Elsi]

I have the same people burnout and very poor people reading skills. I always suspected Aspergers but am always told no. But since you cant test for it, like you can for diabetes, who knows? I have many signs and learning disabilities too. I have a non verbal learning disorder which WAS diagnosed and is common on the spectrum. I have panic disorder and generalized anxiety. I also know that my values and beliefs and things I consider most important are not the norm. I was known as crazy in my family of origin but think I was just different. My entire family is strange so there is the hereditary factor.

Like you, Elsi, I am different, also not comfy with myself until my 40s and want Drews daughter to succeed as an adult and hope that being different doesnt shame her or hold her back forever. Until you accept yourself, you can feel pretty bad about your life. But all that can change

SWOT, the older I get, the more I've come to believe that almost everyone is diagnosable with something at some point in their lives. I think there are as many--or more--or us "weirdos" as there are so-called normal people. And of course with spectrum disorders (or differences, as I prefer to think of them), they are going to bleed out at the edges into something that isn't quite diagnosable but also isn't entirely mainstream. Which is perfectly fine. Rich tapestry of life.

What I think about a lot of how our modern lives push people like me, and your son, and perhaps you and Drew's daughter, outside of feeling "normal" in ways that simpler, quieter, less complex times may not have. Is an Aspie girl still an Aspie girl on a quiet farm in the 1500s, or is she just a quieter than average person going about her structured daily chores with few people to interact with and feeling perfectly content? Would a touch of autism or the hyperfocus ability of ADD give a boy an edge in a hunter-gatherer society in prehistoric times? "Normal" is defined by what is valuable and beneficial in a specific time, place and culture, and that changes. Our culture is loud, fast, hyperconnected and complex. Being able to interact socially with large numbers of people and process lots of competing sensory stimuli is considered valuable and therefore normal in our world. That wasn't always true. I often wonder how many of our "diagnosable" disorders are just part of the normal range of human experience that would have fit in better in other times and places. And how much of our modern increase in problems like depression and anxiety are driven by a mismatch between culture and people, rather than anything instrinsically wrong with the people themselves. We don't do a very good job of finding places in society for people who don't fit the current definition of normal.

But SWOT is right - with self-acceptance of our differences comes peace. Drew, that's where I hope your daughter comes to, much sooner than I did - acceptance of her differences, love for herself as she is, and understanding of what she wants out of her life. It's only when we stop trying to "be normal" and accept ourselves for who we are that we can start to figure out where we fit in the world and take the right steps to get ourselves there.

 

[BusynMember]

Acceptance of ourselves is the main thing and acceptance from those who love us. Until i found that combination, I always felt different in a bad way. But once I stopped caring and found love suddenly I was free to be myself. Not saying I am an Aspie. I wont know in this lifetime. But I am different. My whole family of origin is. My mothers father barely said a word...Aspergers? My bro rocked and banged his head on the sofa as a child and never married...never had a long term live in relationship but is a well liked teacher. High functioning Aspie on the curb of the spectrum? He was never diagnosed as one but there are no definitive blood tests, like with me. I was the outcast of a bunch of very strange people. Some were mean and also mentally ill. Others were nice but in retrospect seem spectrumish.

I remember the days of thinking different was worse. But its not. We just have to be mature enough to be appreciative of ourselves and of all unique people

I apologize for stealing this thread too. I pray for this young woman. Regardless of what is wrong she is different. I hope she accepts herself before age 40.

 

[Smithmom]

I just want to reiterate what Elsi said. You don't want her to suffer from isolation but she has to make an informed choice. She needs to know what's out there and decide what she wants. I know you're trying to show her. But there's sometimes a fine line between showing and pushing.

Elsi's point about expanding the limited worlds we all live in are on point. I'll try to offer an explanation of the way I was trained to reach and teach autistic kids. First observe the child to see his/ her choices, interests. Second parallel play at a distance. Third gradually narrow the distance. Fourth insert yourself in a very limited way into the child's play. Fifth increase your involvement in his/ her play until it becomes interactive play. This doesn't apply to your child except in the sense that when trying to reach an autistic child you don't jump into their play or remove them from their game and force them into mainstream class games.

For me Elsi made another huge example. I prefer tons of clothes to choose from. Choosing is fun for me and not at all for Elsi. Eating the same thing more than once a month or so is inconceivable to me I don't use recipes as anything more than guidelines. There's no right or wrong. My experience is that as non-aspies we don't think of differences as acceptable except maybe in clothes and food. My autistic kid has played the same series of video games virtually all his life. I don"t understand why he won't try something new. But that's me. He's happy, feels safe, who am I to tell him what should make him happy?

But these examples are what you'll find in the books and videos. Your daughter will find them and either recognize herself or not. Either way she's learned something.

If it helps any...I have worked with aspies who were removed from mainstream because of behavior. It may take a couple of years but once the world ( family, teachers, etc) around them adapted to them and they understood how to function in the world (home and school) the objectionable behavior ended. I'd also suggest that any future professionals you use be specialists in autism.

 

[Smithmom]

Was thinking about her cutting up the sheets. Why did she say she did it? Just my experience with little kids but they don't identify the reason cause they don't understand it themselves. What we see as bad behavior may be avoidable if we understood. Eg a kid with sensory integration disorder may find the sheets scratchy though we find them comfortable. My own at 28 still will not admit that he has contamination phobia. Can't tell you the rages and destruction that have resulted from that. Eg a rage that resulted in 48 hours drugged in a rubber room cause his foods were touching on a plate. But he wouldn't and won't admit that he has feelings that would be regarded as different.

 

[Drew64]

Well I didn’t ask her. She was mad cutting up my wife’s stuff. That’s the reason. Today took her to have hair looked girl was great and gave her options. Cut it a little shorter or use clip on extensions. Both were no answers. I left it at that for now. Later took her to dentist appointment. She hasent brushed her teeth in a while. I gave up on asking. Two cavities for which go back in 2 weeks. She said she didn’t care. She likes her miserable life. Again I offered her support and told her what mom did was horrible but you can’t live like she is. Got home and she went right up to computer to play. She doesent want to go to classes now until her hair grows back. I have to laugh because that’s going to take a year. I will have to see about maybe having her just take an art class since graphic arts is her interest. Maybe they can move her to the daytime one. Or she can just do the night one. That I have to speak to my wife about amd daughter. At least it would get her out of the house and maybe find someone with similar interests. I was hoping she would join a club. They have like 100 of them. My feeling is now if she’s not going to class or working than she has to go to therapy at least once a week or no laptop. It’s to fill you in I was talking to my aunt about things and she reminded me my daughter threw tantrums when she was young too. But this came to a head when her best friend was out of school because she started self mutilating. At the time we didn’t know it we thought she was just in hospital for an illness or something. Later found out that was why. She missed two years of school amd supossedly an e mail that got out from someone blamed my daughter for her doing this. Then sophomore year in high school the year this friend came back my daughter stopped want ing to go to school. Around October. Has never had contact since. We had to find another alternative school for her. Did ok first year at the school. A lot of texting me about stuff. Second year did great. Senior year just made it by skim of teeth as stopped doing homework and barley studied. So I think this friend issue has a lot to do with it. She feels hurt. They where attached at the hip. Similar interest in art. I can’t prove it and she won’t talk about it and it was felt not to ask in therapy.

 

[Smithmom]

I'm sorry that you're unhappy.

 

[Elsi]

Drew this sounds like a really hard situation to be in. And none of us here can understand all of the nuances from a distance. But it sounds to me like school is something YOU want for her rather than something she wants for herself right now. And when that is the case with our adult children, we put them in a position where they can hurt us by rebelling against what we want. You’re still in the child/parent rebellion struggle: I want you to do this. Well I’m not going to, because it’s what you want and I can get power from denying you what you want.

She has to want school for herself. This is her life she Is preparing for, not yours. If she messes up school, the consequences are hers to own, not yours.

It sounds like she’s not there. Even without the hair, she would find another external reason she can’t do this right now. She’s anxietal about facing the environment and scared of failure so she’s going to preemptively find an external reason to blame her failure on and then make it a self fulfilling prophecy. Because then she can still say, well I would have been successful if they hadn’t done xxxx. She doesn’t have to look deeply within her self.

I think you need to simultaneously make her more accountable and step out of her decision making right now. Because what she needs to be accountable to is not you and your expectations but herself and what she wants for herself. And it doesn’t sound like she’s figured that out yet.

So perhaps it’s time to say hey, you don’t want to go to school now? Fine. If you want to withdraw from your classes you can do that, you’re an adult and it’s up to you. Here’s the steps you would need to take. Can you handle that or do you want my help? Do you want to practice what you would need to say? But you have to do something if you’re not in school. You have to go to counseling, and you have to work or volunteer at least x hours each week. Do you want my help figuring out ideas for that or do you want to do it yourself?

In other words, offer support, but put her in control of the choices. She has to get out of teenage rebellion thinking and realize that this is about her and her life, not you.

It’s ok if she’s not ready for college right now - or ever. There are other life paths. What’s not ok is sitting in her room 24/7 and not contributing in any way to the household, her own support or society. Make figuring out how she wants to do that a collaborative effort that put her in the drivers seat and you in a supportive role. Maybe with the immediate anxiety-provoking threat of college off the table you can all take a step back and regroup a bit.

If you’re not seeing a counselor yourself, I highly recommend it. Good luck. This is really tough.

 

[Smithmom]

This means nothing now but just fyi. Many colleges have learning disability programs. Including tutoring programs. Also many now have programs for autistics on all levels. These programs usually include housing options. As autistics sometimes have scattered skills these programs can allow for advanced classes in topics where the student has high skills while not forcing classes where the student is not strong. These may not be degree programs but can be an education and lead to a career. Just fyi

 

[Drew64]

Well that’s great advice elsi. I was thinking of just having her do the art class at night but I will try your verbage. Sometime I just lecture and yes I want her to go to college amd she talked about it as well. Originally she wanted to go to Pratt. Lofty goals. We chose community college because close to home, cheaper amd has a lot of student services like tutoring amd counseling if she chooses. She always feels she Doesent need any help.

 

[Smithmom]

Autism is called a developmental disability because "normal" development doesn't happen. It happens, just not on a "normal" timetable. In the case of autism sometimes not in the "normal" progression.

So if she is aspie and you want a 19 year old to be like other 19 year olds....well not realistic. My 23 yr old autistic son is going on 12 with girls, 18 with the concept of working, 14 with the concept of independent living. ... So she doesn't feel she needs help... Maybe 12? Doesn't see the connection between education and future? 12 again? Unhappy at home but no desire for independent living? Certainly not 19!!! With an autism label this all becomes "normal"... Normal for autistics.

 

[Smithmom]

Guess what I'm saying is look at your expectations. You wouldn't try to potty train an infant cause their body and brain can't do it. You can't expect a 6 yr old to cook dinner. Can't expect an ADHD kid to sit through a 3 hour film. Yes, can expect a 19 yr old to be work toward her future. But not a 12 year old. How mature is she really? Are you being realistic about her maturity? I say this because any 19 yr old unhappy at home is running to find scholarships and schools with dorms miles away. Bugging you for cash to get her an apt. Looking for a job to get money. Anything to get out of the house so she can sit with her computer all day alone. Is she really 19?

 

[Drew64]

No Ive always said she less mature than her age but I e looked at her evaluations again from the school to psychiatrists to a neuropsychologist. These were all done at different times in her life. The one common word I see is anxiety. At one time oppositional. I do know she is stubborn. I guess what I am saying is she has always had good grades and was shy to a point but starting in mid 7 th to beginning of 8 th grade started to see her give us more of a hard time. As of now I told her it’s her decision tomorrow about class but if she drops all of them amd won’t try amd look for a part time job then she has to go to some type of therapy.

 

[BusynMember]

Anxiety is huge on the spectrum. It is so often misdiagnosed as other stuff.

I am diagnosed with panic disorder and generalized anxiety disorder. But at least 10 percent of the population has it and most leave the house. At one point in life i was afraid to leave the house and I had three kids to care for. I forced myself to do what I had to do but it was scary for me. Still. Had to be done.

in my opinion something bigger is going along with daughter than just bad anxiety. Anxiety sucks big time by itself but there seems to be an extra component with daughter. She is afraid of life itself. And she wont push herself. And she does seem very young for her age.