Help for adults too spread out and too confusing

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Over the last few years we have seen a dramatic movement in helping out children with autism while close to nothing has been done for the adults who were diagnosed late in life. At least that has been my experience. Ever since I have been out of college the upward trend that I experienced in college has vanished and I have been going nowhere but downhill.

I would just like to say that this would not have happened if I would have been told, " ok, here is what you do next. You go to talk to this professional and they will help you work through your social and communication deficits that you still have left so that way you can reach your employment goal."


Luckily I am having a phone conversation with someone tonight who can hopefully help me out of this predicament I am in.

I am a sociologist who studies autistic people as a minority population. I'm currently analyzing the data collected from my survey, Autism Disclosure in the Workplace. I hope to have other studies open soon. You can find more information about possible future projects at the link in my signature line.

In order to provide help for adults on the autism spectrum, one of course first needs to know what the problem is. In the past 5-10 years, several papers have come out that have corrected misconceptions about autism. For example, there is a misconception that autistic people experience less or no empathy. It turns out that the tests used to measure empathy were heavily dependent on language skills. In addition, no one had considered in the original tests that minority classes have difficulty putting themselves in the positions of an oppressing class. There is an ongoing debate that intelligence tests are ineffective or useless in autistic people unless they happen to have very high language comprehension. There has been no discussion for how ABA-raised autistic adults can function as workers, spouses, and parents as compared to their predecessors. There has been no discussion of natural coping mechanisms for autistic adults to manage stress and exhaustion.

I know, because I've been looking.

I have noticed that other people are in graduate school and are young professors in the US and the UK also studying autism from this perspective, which is called a "critical" perspective. It's basically a part of the advocacy movement, of which this site is a frontrunner.

So, I mean, I think help is coming.

Specifically I would say that you have to be active in finding your own help right now. What are you having problems with?

Well the problem that I am having right now is that I need help with "ironing out" all of my social and communication deficits in the workplace so that I can meet my goal of obtaining employment with the federal government. I just finished speaking with someone else about this. I told them that I am looking into working for the federal government at a local VA hospital.


The person that I spoke with informed me that there are a lot of predatory companies out there whose sole purpose is to maximize profit then help people. I was also informed that the best sources of help can be found at the local level. They would also have services that I need which would either be free or on a sliding scale. I am about to have a phone conversation tonight with someone who offers their services on a sliding scale fee. So wish me luck!

From what I have read, seeking a professional diagnosis can be expensive. I was diagnosed at the age of 26. Since then I have been working long and hard to make my life normal again. Up until 2013 I had the right supports and the necessary money in order to make things happen for me.


But now I am at a low period again. I think the best solution may lie in seeking out help from your local Autism Society. I have been told that in this field receiving help for employment can lead you into the jaws of a lot of financial predators. I wanted to hire out this job coach who specialized in helping people with HFA and Asperger Syndrome obtain and maintain employment. Problem is her services cost $115.00 an hour.

Yeah, the minimum has been either $160/hour or more than $1300. Neither of which I have. I have sought help, but there is only so much that they can do. They can't invent a practitioner who will accept Medicaid.

I don't need a job coach. I need a reason to tell employers to be explicit in direction, and not to read into the things that I say. To not fire me for not 'fitting in', disregarding my job performance.

When I was 20 I went through testing & they told me I communicated too well verbally & seemed too intelligent to have anything on the autism spectrum. It cost me more than two thousand just to be told that cr@p. I tried to get retested when I was older & I was told by a few groups & organizations that Aspergers could only be diagnosed before I turned 21 & they were also surprised at how well I communicated.

I think a general practitioner could technically diagnose autism, but since I doubt very many have had specialized training in diagnosing autism, I don't think may would. Keep in mind, that many doctors are themselves on the autism spectrum, so it's not just an ignorance issue. Without the training, most professionals would not be willing to go out on a limb. A psychiatrist would be qualified and willing to diagnose autism. From there, you can give formal disclosure to anywhere you need and ask for formal accommodations. Remember that ONLY formal disclosure is ADA protected. I think it works similarly outside of the US.

As to job coaches, keep in mind that they will be willing to help you obtain and keep *A* job, not necessarily a job that is best for you. You may not want the kinds of jobs they will be offering you. It seems to depend on the skill and sensitivity of the specific job coach.

As to things like worrying that your capabilities as a parent might be questioned. I think you could get around that by finding help for whatever it is that is the specific problem, while not discussing autism. Which I don't think is relevant anyway. I have a toddler so I'll use him as an example. Let's say that my toddler is in a willful stage and is very large and strong for his age. I'm having trouble disciplining him and I don't really know how. My stress is unmanageable when I'm alone with him. For a problem like that, I would just ask older parents with adult children how they dealt with it, and then I would ask my general doctor for emergency stress relief medication, like Xanax or Ativan. Something where I can still drive, but I will be able to calm down and deal with things again. Autism never has to be brought up. That's just one example. I can help with whatever the specific issue is if you give me another example.

I don't play with him well. I don't do the imaginary stuff. That was easy with my daughter because neither did she. My son is constantly another superhero or tv character. We can read books, and we talk about his friends, and we go to the zoo and the aquarium, and on outings. But imaginary play is left up to my husband. I will build things with him, but not frequently (my husband IS a builder, so I leave that to his particular expertise).
I have issues cleaning the house. I can't do it half way, and I get exhausted trying to clean it completely (scrubbing and organizing) because not only is there so much to clean, but we are also under construction.
I have issues with being interrupted when I'm concentrating on something. Not so much from my 3 year old, but my 11 year old and my husband? Not so well. Or I won't 'hear' them when they are talking to me. Or they read into things I say (my daughter mostly, she will take me just staring into space as me being mad at her. I don't think she reads emotional cues well either though).
The outbursts when there is too much yelling and commotion and my husband turns to yell at me for shrinking back. Not wanting them to hug me, invade my space, etc. Getting supposedly 'disproportionately angry' when they do stupid things, like changing the background picture on my computer (as well as the screen saver).

Things that, without a diagnosis, make me seem like a total lunatic. The supposed 'excuses' I have to do or not do something that other people like to tell me are ridiculous and should just be 'changed'. But things don't work that way.

Can I try to take some guilt off your load, Brittniejoy??

Adult autistic married female mom here. I can't say I've walked in YOUR EXACT SHOES, but I've probably worn a similar pair.

1) NO parent can play all the things with the children. That's a myth. And you're not supposed to be able to. They're CHILDREN. The need to find other children to do some of their children things with. Do you play SOMETHING with them regularly?? Watch them play and respond when they talk at you about it a good bit of the time?? Admire their art and applaud their stunts (at least when they're not horrifically dangerous)??

I don't do imaginative play. That capacity died somewhere in my mid-20s. Neither does my husband. So they just have to imagine alone, or with each other, or with friends. It doesn't seem to have hurt their capacity to imagine.

I don't do video games. The graphics on every system after the N64 (inclusive) make me horribly motion sick. I can watch, in limited amounts, but I cannot play at all. ALL FOUR of my kids love video games. I can praise their play (and limit their play). I can buy them books about the games. I can read them books based on the games. I can take them shopping for games as rewards for meeting behavioral and developmental goals. But I can't play, will never be able to play.

Those things don't seem to have hurt our relationship. Because I can, and do, do all kinds of other things. Play interminable board games. Read. Build. Draw. Allow them to run around and scream when the auditory hypersensitivity isn't too bad (my middle two, DS8 Dx'd ADHD and DD6 suspected ADHD, pretty much burned the volume issues out of me at least when it comes to noises my kids are making lol), take them outside to run and scream when it is too bad, and about 10% of the time tell them they have to stop doing that because it hurts Mommy. Sometimes telling them, in no uncertain terms, that they have to stop that now for your sake isn't a diseased parent thing. It's a healthy boundaries thing, and it teaches them to have respect and empathy for others.
Makes them better adults, someday...

...and THAT is one of your main and most important overarching jobs as a parent. Interaction is necessary. Playing somehow is important. Being a source of childhood joy in some manner matters. So does keeping them safe and teaching them boundaries and respect and all the things that make it possible for them to grow up into responsible, compassionate, respectful adults. That's something that people forget, a lot, in all the oxytocin and other hormones of parenting. We're not raising children. We have children right now, and they have to be children, but our job is to raise them into adults.

2) On housekeeping: Straight from my therapist. Cut yourself some slack. You have plural young children. It is NEVER going to be perfectly clean. NEVER (at least, not for more than 10 minutes and not in more than one room at a time). Is it sanitary (and by sanitary, I mean nothing growing in the sink-- too often anyway-- no accumulating piles of feces and puddles of urine on the floor (the dog uses the floor at some point almost every day here, and DD3 still has accidents sometimes, but they get cleaned up while they're still warm unless they happen in the middle of the night)?? Is it neat-enough (neat enough means you can find the floor and walk through the rooms without tripping over a whole lot worse than the kids' toys and mostly sort out which laundry is dirty and which laundry is clean)?? Is there food to eat, and is a significant majority of it reasonably healthy (reasonably healthy means they are not living on pop, chips, candy, and powdered donettes, and fruits and protein are consumed and vegetables make an appearance-- dumped out of cans and heated up in the microwave is acceptable-- it does not mean that every meal is home-cooked from scratch using organic produce and whole grains)?? If you answered "Yes, basically, most of the time anyway," YOU'RE GOLDEN.

I have a friend who has 3 kids under the age of 8 and a perfectly clean house (upstairs, anyway). She throws away all toys and personal effects left on the floor after the older two leave for school in the morning, and again after they go to bed at night. And the downstairs (rec room and laundry room) don't even look like they're part of the same HOUSE. She "speed cleans" by opening up the basement door and throwing everything down the steps. About once a month, I go over and help her clean the downstairs in exchange for either a night of babysitting or her coming over here and helping me wash crayon off every wall in my house from floor to waist height. But you have to make it into her inner circle to know she's not perfect (OCD, PTSD, GAD, ADHD, and some letters not otherwise specified). UPSHOT: If someone with plural young children looks like they're keeping a perfect house, IT'S AN ILLUSION (and they probably have letters too, because the unlettered people I know don't bother with the illusion in the first place).

One other cleaning thought, from my experience: NEVER expect The Whole House Job to be done. It is always in flux, a constant ongoing process. You don't do the whole house all the way. You do the dishes all the way. You do the counter all the way. You do the living room all the way (or maybe a section of it, say clearing clutter and vacuuming but ignoring the book shelves or something). You do a couple loads of laundry all the way (but not the whole laundry mountain, unless you magically get it down to where the whole mountain is consistently only 2 or 3 loads-- my current Holy Grail). If you're having a GREAT day, you do a bedroom all the way.

By the time you accomplish that, you've served a meal and there are dishes in the sink again (and something has been spilled on the kitchen floor, and it's OK, because you'll swipe it with a dishrag and mop it all the way the day after tomorrow). Individual jobs can be done all the way. The whole house?? Maybe when very special company is coming over, like three or four times a year. If you're GOOD.

BuyerBeware- Your post made ME feel a lot better too! Thank you from all us tired moms!