Autistic Spectrum Disorder

[iamshack]

About 5 months ago, my son John was diagnosed with Autistic Spectrum Disorder.

 

This was not entirely shocking to my wife and I, as John had several early markers of the condition, and my wife’s brother was diagnosed as a child with something which now would be considered to be “on the spectrum,” so we had some exposure to some of the behaviors prior to John beginning to exhibit some of the markers.

 

John did have some speech, but not nearly as many words as what is considered “normal” (maybe like 5-10 words when he was supposed to be closer to 30-50). His gross motor skills were fine, but his fine motor skills were lacking a bit (drawing or coloring with a crayon, for instance). He often seemed entirely overwhelmed in situations wherein there was a lot of sensory inputs (sounds, lights, strangers, colors, etc). He was (and still is) an extremely picky eater. My friend would send me pictures of his similarly-aged daughter eating pizza and I would look on in amazement. John seemed unwilling to even consider anything with any texture (other than a puréed texture).

 

Johnny was about 27 months when he was diagnosed. I remember the day we were given the diagnosis. The therapist said “There is no sugar-coating this. This just sucks.” We immediately got him started in Applied Behavior Anaylsis, or ABA. ABA is a fairly reputed manner in which to assist children (and adults) on the autism spectrum with learning. It is very regimented and repetitive. It was honestly not my first choice for my son (I preferred a slightly different program called the Denver Model), but ABA was what was immediately available to John (and covered by insurance). We are still waiting on the therapist that diagnosed John to have a spot open for him in her Denver Model treatment.

 

In the meantime, It has been very busy. We started out with a woman coming to my wife’s parents’ house to work with him from about 8-11 am, Tues - Fri. Mondays, he goes to Occupational Therapy for an hour. After about a month, the clinic requested that we add more sessions. I pushed back, because I was concerned about John getting worked too hard, but eventually, I relented. For the past 4-5 months, a different woman has come to our home Monday - Friday afternoons, where she works with John from 2:30 - 4:30. Then Saturday and Sunday, yet another girl comes from 10 - 12. All in all, Johnny gets about 35 hours of one-on-one learning every week.

 

Over the course of the last 5 months or so, Johnny has made some pretty significant strides. He is beginning to speak more often, and say many different words. He is also beginning to respond to our questions with answers. He has become very adept at matching pictures and completing puzzles. He is beginning to use something called PECS (a little Velcro board where he can place pictures of what he wants to communicate) to tell us what he wants, rather than us always anticipating HIS needs. Perhaps the most significant change in him has been his ability to maintain his composure and remain calm when something out of the ordinary occurs, such as a stranger coming by the house, or a waiter trying to talk to him when we are out at a restaurant, or visits to the doctor’s office, etc. What was always a huge fuss or screaming episode is usually now a much more pleasant affair.

 

Anyways, I chose to post here because my guess is that some other dads may be here that are going through this, and I figured I would identify myself as a potential resource, or perhaps just someone to vent to. One of the things that has really stuck with me over the last six months or so is something I read shortly after Johnny was diagnosed.

It read something to the effect of “one of the first things you must do as parents, is to grieve over the dreams you had for your child.” That is some serious s***, and while it is a bit harsh, I suppose there is some truth to it. Nonetheless, I have come to appreciate and enjoy so much more of what Johnny does every day/week/month because of the new meaning it has for me, as his father.

[Jack Parkman]

I have written about issues with having ASD on this forum, as I live with it every day

Feel free to PM me if you have any questions, and if you want to meet with me. I have a bunch of experience from your son's perspective. I'd be glad to help in any way I can.

Also, Getting the diagnosis at a young age can be a good thing, depending on where your son ends up on the spectrum. If he becomes of the high-functioning end, like myself, the strategies for adaptation/conformity are easier to take hold in the child the earlier you get the diagnosis. I didn't get diagnosed until I was 17. It has been a difficult transition to adulthood because I didn't have a lot of the tools and strategies I needed during HS/College. Even more so were the social expectations of adult behavior that one doesn't understand. Familiarize yourself with the term "executive functioning" and know what the skills that are affected are. Your son will struggle with them for the rest of his life. Things aren't hopeless though, because there are services and organizations out there that help "fit" individuals with ASD into mainstream society. You don't have to give up your dreams for your son, they just need an adjustment based on functioning level. The biggest things going forward are. a) does he become verbal or not? and b) Does he have an intellectual disability or not? Until those things are known, you won't have an idea of what kind of services you may/may not need. For the most part, I lucked out on the autism spectrum lottery, but that leaves its own set of issues. I could talk about this for ages, so I'll stop now.

 

 

Edited February 25, 2018 by Jack Parkman

[southsider2k5]

Good luck Shack. It has to feel like the weight of the world to get a diagnosis like that at such a young age.

[ChiliIrishHammock24]

Did you say how old he is now? I would assume almost 3 based on adding up the months you outlined?

[iamshack]

Did you say how old he is now? I would assume almost 3 based on adding up the months you outlined?

Yeah, he’s about 32 months.

 

To ssk’s point, it did feel like a lot, but at the same time, if you have the diagnosis at this age you have a much better chance of having them be able to function at a reasonably normal level in the public school system. Not that that is guaranteed by any means, but the earlier you start the therapy, the better your chances.

 

In the last 5 months, we have basically come up with a plan to give our son every advantage we can think of, from changing our housing situation to rethinking how our financial resources are invested.

 

 

[ptatc]

About 5 months ago, my son John was diagnosed with Autistic Spectrum Disorder.

 

This was not entirely shocking to my wife and I, as John had several early markers of the condition, and my wife’s brother was diagnosed as a child with something which now would be considered to be “on the spectrum,” so we had some exposure to some of the behaviors prior to John beginning to exhibit some of the markers.

 

John did have some speech, but not nearly as many words as what is considered “normal” (maybe like 5-10 words when he was supposed to be closer to 30-50). His gross motor skills were fine, but his fine motor skills were lacking a bit (drawing or coloring with a crayon, for instance). He often seemed entirely overwhelmed in situations wherein there was a lot of sensory inputs (sounds, lights, strangers, colors, etc). He was (and still is) an extremely picky eater. My friend would send me pictures of his similarly-aged daughter eating pizza and I would look on in amazement. John seemed unwilling to even consider anything with any texture (other than a puréed texture).

 

Johnny was about 27 months when he was diagnosed. I remember the day we were given the diagnosis. The therapist said “There is no sugar-coating this. This just sucks.” We immediately got him started in Applied Behavior Anaylsis, or ABA. ABA is a fairly reputed manner in which to assist children (and adults) on the autism spectrum with learning. It is very regimented and repetitive. It was honestly not my first choice for my son (I preferred a slightly different program called the Denver Model), but ABA was what was immediately available to John (and covered by insurance). We are still waiting on the therapist that diagnosed John to have a spot open for him in her Denver Model treatment.

 

In the meantime, It has been very busy. We started out with a woman coming to my wife’s parents’ house to work with him from about 8-11 am, Tues - Fri. Mondays, he goes to Occupational Therapy for an hour. After about a month, the clinic requested that we add more sessions. I pushed back, because I was concerned about John getting worked too hard, but eventually, I relented. For the past 4-5 months, a different woman has come to our home Monday - Friday afternoons, where she works with John from 2:30 - 4:30. Then Saturday and Sunday, yet another girl comes from 10 - 12. All in all, Johnny gets about 35 hours of one-on-one learning every week.

 

Over the course of the last 5 months or so, Johnny has made some pretty significant strides. He is beginning to speak more often, and say many different words. He is also beginning to respond to our questions with answers. He has become very adept at matching pictures and completing puzzles. He is beginning to use something called PECS (a little Velcro board where he can place pictures of what he wants to communicate) to tell us what he wants, rather than us always anticipating HIS needs. Perhaps the most significant change in him has been his ability to maintain his composure and remain calm when something out of the ordinary occurs, such as a stranger coming by the house, or a waiter trying to talk to him when we are out at a restaurant, or visits to the doctor’s office, etc. What was always a huge fuss or screaming episode is usually now a much more pleasant affair.

 

Anyways, If chose to post here because my guess is that some other dads may be here that are going through this, and I figured I would identify myself as a potential resource, or perhaps just someone to vent to. One of the things that has really stuck with me over the last six months or so is something I read shortly after Johnny was diagnosed.

It read something to the effect of “one of the first things you must do as parents, is to grieve over the dreams you had for your child.” That is some serious s***, and while it is a bit harsh, I suppose there is some truth to it. Nonetheless, I have come to appreciate and enjoy so much more of what Johnny does every day/week/month because of the new meaning it has for me, as his father.

That is outstanding. I you are worried about the amount of time still, don't. The more you can get him early on the better he will be. His behavior and such is much more malleable early on and it will continue topay big dividends later in life.

 

You are doing the correct things as a parent.

Edited February 25, 2018 by ptatc

[iamshack]

I have written about issues with having ASD on this forum, as I live with it every day

Feel free to PM me if you have any questions, and if you want to meet with me. I have a bunch of experience from your son's perspective. I'd be glad to help in any way I can.

Also, Getting the diagnosis at a young age can be a good thing, depending on where your son ends up on the spectrum. If he becomes of the high-functioning end, like myself, the strategies for adaptation/conformity are easier to take hold in the child the earlier you get the diagnosis. I didn't get diagnosed until I was 17. It has been a difficult transition to adulthood because I didn't have a lot of the tools and strategies I needed during HS/College. Even more so were the social expectations of adult behavior that one doesn't understand. Familiarize yourself with the term "executive functioning" and know what the skills that are affected are. Your son will struggle with them for the rest of his life. Things aren't hopeless though, because there are services and organizations out there that help "fit" individuals with ASD into mainstream society. You don't have to give up your dreams for your son, they just need an adjustment based on functioning level. The biggest things going forward are. a) does he become verbal or not? and b) Does he have an intellectual disability or not? Until those things are known, you won't have an idea of what kind of services you may/may not need. For the most part, I lucked out on the autism spectrum lottery, but that leaves its own set of issues. I could talk about this for ages, so I'll stop now.

JP, I appreciate your perspective, any by all meand, feel free to ramble on as much as you like. I will always be interested to read your thoughts. I also appreciate your willingness to allow me to PM you.

 

Thank you so much.

[iamshack]

That is outstanding. I you are worried about the amount of time still, don't. The more you can get him early on the better he will be. His behavior and such is much more malleable early on and it will continue topay big dividends later in life.

 

You are doing the correct things as a parent.

Thanks ptatc.

 

The workload was definitely concerning for me initially, and not only for John, but for the entire family. Trying to balance realism, practicality, and what is best for John can sometimes be a struggle.

 

The good thing is, we are making some major changes which will allow the best interests of John much easier to put in the forefront.

[Jack Parkman]

Shack, Be prepared to go to IEP meetings and fight the school admins for every last bit of accommodations that Johnny will need once he gets to school. Schools don't like to give out the necessary accommodations for ASD students easily. It takes a ton of paperwork, meetings and arguing to get them to do their job. You and the Mrs. should be on the school immediately and let them know you mean business, when the time comes. Have all of your documentation ready by the time Johnny is ready for school.

 

Also, I recommend you read this book, by one of the foremost ASD experts who practices in the Chicago area.

https://www.amazon.com/Finding-Gray-Timothy...g/dp/0615357040

 

Hopefully, Johnny will not have an intellectual disability, and the help you're giving him will set him up well for adaptation to mainstream society/social situations. If only I was so lucky to have help from early childhood. I spent the entirety of it knowing something made me different, but not knowing what it is. I never really got to enjoy being a kid, and was going to doctors, therapists, and group sessions constantly.

Edited February 25, 2018 by Jack Parkman

[iamshack]

Shack, Be prepared to go to IEP meetings and fight the school admins for every last bit of accommodations that Johnny will need once he gets to school. Schools don't like to give out the necessary accommodations for ASD students easily. It takes a ton of paperwork, meetings and arguing to get them to do their job. You and the Mrs. should be on the school immediately and let them know you mean business, when the time comes. Have all of your documentation ready by the time Johnny is ready for school.

 

Also, I recommend you read this book, by one of the foremost ASD experts who practices in the Chicago area.

https://www.amazon.com/Finding-Gray-Timothy...g/dp/0615357040

Thanks JP!

 

I have read a number of books so far...will definitely give this one a read!

 

Question: Do private schools typically provide better services for children with ASD? Or is the better route to go public and fight it out, like you mentioned?

[Jack Parkman]

Thanks JP!

 

I have read a number of books so far...will definitely give this one a read!

 

Question: Do private schools typically provide better services for children with ASD? Or is the better route to go public and fight it out, like you mentioned?

Go public and fight it out, because by law public schools have to accommodate, while private schools can do whatever they please. Private schools can give you the bird if they want to.

Edited February 25, 2018 by Jack Parkman

[Jack Parkman]

Also, not knowing what numbers Johnny has drawn in the ASD lottery, I can give you some info about possible transitions to adulthood for 10 years from now if he gets the long end of the stick.

 

Coding Autism- San Francisco, CA takes individuals on the higher functioning end when they're in 9th grade and prepares them for a career as a computer scientist/programmer

http://codingautism.com/

 

This is a program that SAP has to take individuals on the higher end, and trains them to be QA software testers

https://www.sap.com/assetdetail/2016/04/9e6...a71af511fa.html

 

Microsoft has an annual Autism Hiring program, and hires roughly 20 individuals with ASD each year.

https://www.microsoft.com/en-us/diversity/i...ty/default.aspx

 

Most of the opportunities today are in Software QA/Development, and more are popping up each day.

These programs all popped up in the last 3-4 years, which was sadly too late for me to get involved, as I had already completed my BS in Chemical Engineering in 2011.

 

There has been a huge increase in the amount of opportunities for individuals with ASD to assimilate into mainstream society in the last 3-4 years.

If you know the statistics roughly 2.5% of men and 1.6% of the general US population are on the spectrum. Multiply that by 330 million and think about the public health issues if they are dependent on their family for financial support indefinitely. Get involved. Fight the good fight. Autism Speaks is viewed as a crap organization by those in the community so don't bother with them. They are more for those family members who feel victimized because their son or daughter is on the spectrum. Not a good mentality to have. Be proactive, not reactive.

 

 

Things are slowly getting better for us, and those who are under 20 have an infinitely better chance to assimilate than I did, due to early intervention and new educational opportunities. It isn't hopeless anymore, so rest easy.

 

 

Another thing-In the DSM-V, ASD is categorized under the category of Pervasive Developmental Disorders. This means that your son will be developmentally delayed. Pervasive also means that the disorder affects every part of your life. Throughout my life I have always hung out with people who were 5-7 years younger than I was, because that is where I fell on the developmental delay, or people who were the same age as my parents, because they understood I was different. Don't expect your son to act his age, ever. He will always be behind, even into adulthood. I learned that the hard way. As a 31 year old man, it is hard to explain to people that emotionally and socially I'm in my early-mid 20s, because that is how long it took me to catch up to the social skills and protocol of older kids/adults.

Edited February 25, 2018 by Jack Parkman

[ptatc]

Go public and fight it out, because by law public schools have to accommodate, while private schools can do whatever they please. Private schools can give you the bird if they want to.

This is so true. Take the issue to the public schools and fight it out. The only exception is if you can find a private school who is willing to work with you. They will have better resources in many cases. Meet with the private schools in the area and youll know right away if they are willing.

[Jack Parkman]

Also one thing is important for you, as the parent. People on the spectrum take words spoken by anyone literally and permanently, until explained otherwise. One of the things that is important for you and your wife to do as parents, is being consistent, and to explain to your son which tasks you give him need to be done every day, and which are to be done only this time. Otherwise, he will get overwhelmed with the information given and will have a meltdown. Having an autistic meltdown usually happens when the anxiety of dealing with everyday life reaches a head and coping skills no longer work. It happens to me even to this day, though it it is rare and I usually only have one once or twice a year. As a small child, if he has a meltdown it will usually manifest itself as a temper tantrum, as a preteen and older, it will usually manifest itself as a pissing match and being stubborn as a mule about the autistic perspective.

 

People with ASD view the world in concrete rules and regulations(usually referred to as Black & White thinking) . My brain is kind of like the Dewey decimal system in a library. For each situation, I have to go into the card stack and pull out the situation at hand, and how society expects me to behave in that situation. It also has a bit of an input/output delay For example: I have some issues with personal social space. For years I used to call people on the phone at weird hours or blow up my friends' phone when I wanted to talk to them. Sometimes, it can take a long time to drill proper social protocol through my thick skull. I am much better at it now, but I still have the occasional slip up. My friend group knows that they have to lay rules about when I can call them or text them on their phone so that I know when it is appropriate to call/text them. Being on the spectrum, it is really hard to think "on the fly" unless you have supreme confidence in your ability to solve the problem. For some reason, solving a multivariate calculus problem or designing a controller for a chemical reactor is easier for me to do than being in a social situation. If you don't trust yourself, you have to refer to the card system in your brain and shut your mouth until you pull up the right one. Very hard for me to do consistently.

 

I gravitated toward math and science in school because they had rigid, concrete rules, and (especially post-secondary) grading was straightforward and objective. If you're right, you know it. If you're wrong the same is true. There was no argument. In school, subjective grading was nearly impossible for me to handle, and I would agonize for hours and hours with my English/Literature/Social Science papers because the grading was based on the whim of the teacher/Professor, and I couldn't read their mind ahead of time. I used to write probably 3-4 different papers and agonize about which one to turn in. It was so anxiety producing, to not know whether I was going to do well on the assignment. I had to just turn it in and hope. I would have sleepless nights until I got the results back. Be forewarned about this. Minimize the ambiguity for your son as much as you can. When certain tasks have to be done, lay them as non-negotiable and you'll get better results. Do whatever you can to calm anxiety about things that your son can't control. Logic sometimes doesn't work for people who are anxiety riddled, so don't be surprised if it takes a while(as in 12+ months) for a new behavior to become habit. It is easy to get locked into a routine and not be able to change a behavior because if you've ever heard the expression "old habits die hard" multiply it by 1000 for a person on the spectrum. For the most part, the only thing consistent about my life is my inconsistency, because I'm stuck in between my old, childhood habits and the new, more positive, adult-like habits I'm trying to create.

 

There is an incredible amount of anxiety just existing as a person on the spectrum, because you want everything to have clear rules that are set in stone and reality doesn't work that way. So in every new situation, you have to make a mental note of how to react appropriately and every day you have to go into the files and re-write cards for the same situation with a Q&A flowchart. If x then y, if u then w, and so on.

Edited February 25, 2018 by Jack Parkman

[Jack Parkman]

One more thought- Don't let Johnny create a "bubble" for himself. Expose him to new situations so he can build up his library of how to handle situations appropriately for his age. He'll probably still be behind, but I created a bubble for myself of familiar situations that I was comfortable in and it held back years of progress toward behaving like an adult because I had to build up my library.

Edited February 25, 2018 by Jack Parkman

[iamshack]

JP,

I can’t thank you enough for sharing all your thoughts and perspective on this. This is extraordinarily helpful.

 

Please do not feel compelled to continue to share, but also know that I am enjoying all of your thoughts and advice very much!

 

 

[Jack Parkman]

JP,

I can’t thank you enough for sharing all your thoughts and perspective on this. This is extraordinarily helpful.

 

Please do not feel compelled to continue to share, but also know that I am enjoying all of your thoughts and advice very much!

Don't sweat it. It is very therapeutic for me to share, because I'm going through a life transition right now. I just switched jobs, and am trying to find a new career. Agonizing about whether to spend thousands of dollars again to go get the training necessary to fit in where I can, or try to figure something else out. I had always intended on being a Chemical Engineer, but the industry rejected me and I have been out of school too long to jump right into a job and be in a position to be successful. I had a lot of "catching up on growing up" to do after I graduated college. Imagine going through high school and college with the organizational/time management skills of a 6th grader and 9th grader, respectively. I had no clue how to deal with anxiety at the time. I didn't have the tools to succeed when I graduated from college. I spent the same amount of time learning my craft as I did learning about being an adult. It was an college education in and of itself. Learning what types of things are/aren't acceptable at work, how to navigate the interview process to the best of my ability, etc. The hardest part for me was the acceptance of blind faith in the job search process. Job searching is a numbers game, and you don't know what the number is. It is incredibly frustrating and anxiety producing for a person on the spectrum. You have no idea how long you need to work, how many resumes you have to send out, and how long to keep with a strategy before scrapping it. I made the horrible mistake of not giving any of the possible strategies long enough to actually produce results before scrapping them out of frustration of lack of results. I wanted evidence that the strategy was working, and evidence in my book was number of phone interviews I got. I got none in the 1st 6 weeks, so I changed strategies. Before I knew it, 18 months had gone by since I graduated and I had already run out of possible strategies, because I kept scrapping them based on lack of evidence of success. It led to a deep sense of self-doubt and it took me about 3 years to get my confidence in my abilities back because I had to learn all of the realities of adulthood. I had to build up a "library of adulting" from no reference point. A lot of trial and error and lots of complete f*** ups.

 

Some of the most basic rules of being an adult, I was lacking -such as personal hygiene and learning how to drive to work in inclement weather and not completely flip my lid, among other things. I wanted to call in sick every time there was more than a half inch of snow on the ground, because I was freaked about potentially wrecking my car. These are some of the anxiety-ridden behaviors that I had to overcome. I had to learn to take risks, as everyone has to do. In my mind if anything negative was more likely to happen in a given situation, a panic attack would result, followed by a meltdown. Taking an anxiety medication was one of the best things I could have done to aid my personal development. It completely changed my life. I didn't know what it was like to not be 1 step below a panic attack every day, every moment for the first 29 years of my life. Once I could calm down, I could evaluate a situation rationally and I have made so much progress over the last 18 months. I no longer freak out about weird stuff and taking calculated risks. I can logically evaluate a situation now.

 

I worked in a sheltered workshop for high-functioning autistics doing software QA for 5 years, and I left the position in January because it wasn't financially helping me at all. Between the 100 mile round trip to and from work, wear and tear on my vehicles (I completely ran 2 cars into the ground, putting 35K miles on them per year), I was breaking even at best, and spending money at worst. I needed it while I went through my growing up phase, and they helped me figure out how to navigate the workplace in a way that nobody else could. If I would have been offered a Chem E job at age 26 I would have failed miserably and had no idea why I got fired. Now through the help I got at the workshop, as well as years of therapy I was able to find myself and "grow up" so to speak.

 

Right now I'm evaluating my disappointment of what went wrong in my 20s, and moving toward acceptance. I have to learn to let go of the anger about the sweat and tears, as well as the thousands of dollars that my family and I spent on my education to get completely rejected by an industry. Time is an arrow, and it only moves in one direction. I felt betrayed by the system and society, for the wasted decade of my life. I feel misunderstood by everyone, because I know that now that I have the tools to succeed in the mainstream world, I can do pretty much anything for work. However, the 7 years out of school and figuring out how to cope with adulthood because of the late diagnosis, has rendered my education practically useless. Hence the frustration, anger and disappointment. I have to let go of the past, and move forward with what I can do in the present day. High functioning ASD wasn't a diagnosis until 1994, not really being used pratically until around 2000. By 2000, I was already in 7th grade, significantly behind in getting the help I needed. I didn't get diagnosed until half way through my junior year of high school. Once I started getting help I went from a "slacker" to a straight A student. But I didn't realize how far behind I actually was until shortly after my 30th birthday. Developmentally, I was probably around 15-16 years old in maturity level, and about 7th grade in executive functioning skills when I graduated college. I had to jump 10 years in maturity level quickly, and the learning curve was slow and steep. I had no choice but to do things at my own pace, and figure it out. I am eternally grateful to my parents, who have supported me emotionally and financially, while I built my "library of adulting."

 

I am concerned about some of the sheltered workshops popping up for high functioning autistics, mostly started by parents of adults on the spectrum because their adult children can't find work. I am against them for two reasons: 1) It shifts the burden of financial support off of mainstream society and onto the families of those affected by ASD and b) it creates a segregated workplace environment where those with ASD are third-class citizens, who can't achieve the greatest level of independence possible because the people with the ability to give financial independence can point to the sheltered workshop and say-"You go there. There's no room for you here" We then are reduced to having an extremely poor quality of life because we're working part time and living off of the combo of the monetary equivalent of 40 hrs minimum wage(including an SSI check) +food stamps+medicaid+living with our folks and not independently. It shouldn't be the responsibility of those affected and their next of kin to carry the sack of rocks that come along with having high functioning ASD, it should be on the entirety of society. I don't want a $300 handout from the government, I want to be just like anyone else with my level of education. There is a place in regular, living wage jobs for individuals on the spectrum because a significant percentage have a BS in STEM fields. It shouldn't be that hard to create a job that fits our strengths by taking responsibilities from several other jobs and mixing them together for a group of folks on the spectrum. Those companies that I posted earlier are doing it, so why can't everyone? 1.6% of the US population is on the spectrum so that roughly comes out to 6 million individuals, men and women, who need to feel the basic psychological need of being included and appreciated(in terms of financial compensation necessary for independence) for their talents. I'm tired of being financially ostracized. I feel undignified; A third class citizen, who is being told to just hide in my parents' basement and wait to die. The thing I long for more than anything is to be appreciated for my talent to the point that I can be financially independent. I probably will always need a little help being personally independent, but there are support services for that if I can't find a significant other to spend my life with.

 

If one on the spectrum has the tools to succeed, it is not only possible, but probable. Studies have shown this. But American society has no room for anyone different, so here I am. I'm trying to navigate my way through an alien world, where nothing makes sense to me, but most things do for others.

Edited February 25, 2018 by Jack Parkman

[Texsox]

Don't necessarily assume you will be in a fight. At least in the two schools I have taught at it is far from a fight. Be aware that due to state mandate testing requirements accomodations do have to be backed with proper paperwork. Too many schools have tried to hide underperforming kids in categories that are inappropriate for them. Because these are covered by law it isn't as easy as saying hey we have to do this for him because mom or dad say we should. The law calls for proper diagnosis and documentation.

 

I am aware of all of the accommodations that my students have and strive each day to meet those. My admin and the people whose job it is to make certain those accommodations are followed communicate the importance on a very regular basis. I have chosen to basically give all my students extended time to complete assignments, preferential seating, and alternate assignments as necessary.

 

I believe at last count on my campus of over 3,000 students over 500 students had accommodations that needed to be met. So we have an extensive quality control system in place. Communication with the classroom teacher can also be a big help. I love receiving information from parents on what works for their child and what doesn't.

 

 

[iamshack]

Don't necessarily assume you will be in a fight. At least in the two schools I have taught at it is far from a fight. Be aware that due to state mandate testing requirements accomodations do have to be backed with proper paperwork. Too many schools have tried to hide underperforming kids in categories that are inappropriate for them. Because these are covered by law it isn't as easy as saying hey we have to do this for him because mom or dad say we should. The law calls for proper diagnosis and documentation.

 

I am aware of all of the accommodations that my students have and strive each day to meet those. My admin and the people whose job it is to make certain those accommodations are followed communicate the importance on a very regular basis. I have chosen to basically give all my students extended time to complete assignments, preferential seating, and alternate assignments as necessary.

 

I believe at last count on my campus of over 3,000 students over 500 students had accommodations that needed to be met. So we have an extensive quality control system in place. Communication with the classroom teacher can also be a big help. I love receiving information from parents on what works for their child and what doesn't.

Tex,

This is great to know. I appreciate your valuable perspective here.

[iamshack]

Don't sweat it. It is very therapeutic for me to share, because I'm going through a life transition right now. I just switched jobs, and am trying to find a new career. Agonizing about whether to spend thousands of dollars again to go get the training necessary to fit in where I can, or try to figure something else out. I had always intended on being a Chemical Engineer, but the industry rejected me and I have been out of school too long to jump right into a job and be in a position to be successful. I had a lot of "catching up on growing up" to do after I graduated college. Imagine going through high school and college with the organizational/time management skills of a 6th grader and 9th grader, respectively. I had no clue how to deal with anxiety at the time. I didn't have the tools to succeed when I graduated from college. I spent the same amount of time learning my craft as I did learning about being an adult. It was an college education in and of itself. Learning what types of things are/aren't acceptable at work, how to navigate the interview process to the best of my ability, etc. The hardest part for me was the acceptance of blind faith in the job search process. Job searching is a numbers game, and you don't know what the number is. It is incredibly frustrating and anxiety producing for a person on the spectrum. You have no idea how long you need to work, how many resumes you have to send out, and how long to keep with a strategy before scrapping it. I made the horrible mistake of not giving any of the possible strategies long enough to actually produce results before scrapping them out of frustration of lack of results. I wanted evidence that the strategy was working, and evidence in my book was number of phone interviews I got. I got none in the 1st 6 weeks, so I changed strategies. Before I knew it, 18 months had gone by since I graduated and I had already run out of possible strategies, because I kept scrapping them based on lack of evidence of success. It led to a deep sense of self-doubt and it took me about 3 years to get my confidence in my abilities back because I had to learn all of the realities of adulthood. I had to build up a "library of adulting" from no reference point. A lot of trial and error and lots of complete f*** ups.

 

Some of the most basic rules of being an adult, I was lacking -such as personal hygiene and learning how to drive to work in inclement weather and not completely flip my lid, among other things. I wanted to call in sick every time there was more than a half inch of snow on the ground, because I was freaked about potentially wrecking my car. These are some of the anxiety-ridden behaviors that I had to overcome. I had to learn to take risks, as everyone has to do. In my mind if anything negative was more likely to happen in a given situation, a panic attack would result, followed by a meltdown. Taking an anxiety medication was one of the best things I could have done to aid my personal development. It completely changed my life. I didn't know what it was like to not be 1 step below a panic attack every day, every moment for the first 29 years of my life. Once I could calm down, I could evaluate a situation rationally and I have made so much progress over the last 18 months. I no longer freak out about weird stuff and taking calculated risks. I can logically evaluate a situation now.

 

I worked in a sheltered workshop for high-functioning autistics doing software QA for 5 years, and I left the position in January because it wasn't financially helping me at all. Between the 100 mile round trip to and from work, wear and tear on my vehicles (I completely ran 2 cars into the ground, putting 35K miles on them per year), I was breaking even at best, and spending money at worst. I needed it while I went through my growing up phase, and they helped me figure out how to navigate the workplace in a way that nobody else could. If I would have been offered a Chem E job at age 26 I would have failed miserably and had no idea why I got fired. Now through the help I got at the workshop, as well as years of therapy I was able to find myself and "grow up" so to speak.

 

Right now I'm evaluating my disappointment of what went wrong in my 20s, and moving toward acceptance. I have to learn to let go of the anger about the sweat and tears, as well as the thousands of dollars that my family and I spent on my education to get completely rejected by an industry. Time is an arrow, and it only moves in one direction. I felt betrayed by the system and society, for the wasted decade of my life. I feel misunderstood by everyone, because I know that now that I have the tools to succeed in the mainstream world, I can do pretty much anything for work. However, the 7 years out of school and figuring out how to cope with adulthood because of the late diagnosis, has rendered my education practically useless. Hence the frustration, anger and disappointment. I have to let go of the past, and move forward with what I can do in the present day. High functioning ASD wasn't a diagnosis until 1994, not really being used pratically until around 2000. By 2000, I was already in 7th grade, significantly behind in getting the help I needed. I didn't get diagnosed until half way through my junior year of high school. Once I started getting help I went from a "slacker" to a straight A student. But I didn't realize how far behind I actually was until shortly after my 30th birthday. Developmentally, I was probably around 15-16 years old in maturity level, and about 7th grade in executive functioning skills when I graduated college. I had to jump 10 years in maturity level quickly, and the learning curve was slow and steep. I had no choice but to do things at my own pace, and figure it out. I am eternally grateful to my parents, who have supported me emotionally and financially, while I built my "library of adulting."

 

I am concerned about some of the sheltered workshops popping up for high functioning autistics, mostly started by parents of adults on the spectrum because their adult children can't find work. I am against them for two reasons: 1) It shifts the burden of financial support off of mainstream society and onto the families of those affected by ASD and b) it creates a segregated workplace environment where those with ASD are third-class citizens, who can't achieve the greatest level of independence possible because the people with the ability to give financial independence can point to the sheltered workshop and say-"You go there. There's no room for you here" We then are reduced to having an extremely poor quality of life because we're working part time and living off of the combo of the monetary equivalent of 40 hrs minimum wage(including an SSI check) +food stamps+medicaid+living with our folks and not independently. It shouldn't be the responsibility of those affected and their next of kin to carry the sack of rocks that come along with having high functioning ASD, it should be on the entirety of society. I don't want a $300 handout from the government, I want to be just like anyone else with my level of education. There is a place in regular, living wage jobs for individuals on the spectrum because a significant percentage have a BS in STEM fields. It shouldn't be that hard to create a job that fits our strengths by taking responsibilities from several other jobs and mixing them together for a group of folks on the spectrum. Those companies that I posted earlier are doing it, so why can't everyone? 1.6% of the US population is on the spectrum so that roughly comes out to 6 million individuals, men and women, who need to feel the basic psychological need of being included and appreciated(in terms of financial compensation necessary for independence) for their talents. I'm tired of being financially ostracized. I feel undignified; A third class citizen, who is being told to just hide in my parents' basement and wait to die. The thing I long for more than anything is to be appreciated for my talent to the point that I can be financially independent. I probably will always need a little help being personally independent, but there are support services for that if I can't find a significant other to spend my life with.

 

If one on the spectrum has the tools to succeed, it is not only possible, but probable. Studies have shown this. But American society has no room for anyone different, so here I am. I'm trying to navigate my way through an alien world, where nothing makes sense to me, but most things do for others.

JP, I remember you now...Elgin Slim?

 

I again want to thank you, and mention this...you are one hell of a writer!

 

So what are you looking to do now, as far as your career?

[RockRaines]

Good for you man. I volunteer with all sorts of kids across the spectrum and I understand the challenge, but you are doing the right thing.

[Texsox]

Tex,

This is great to know. I appreciate your valuable perspective here.

 

To be clear, I'm not saying those issues don’t happen but going in and demanding the minimum the law requires will get you the minimum. Get the school on your side and you get the maximum. I’m thinking of a player on the golf team last year that we would do anything for. The parents were wonderful to work with and we appreciated all of their support.

 

 

[iamshack]

To be clear, I'm not saying those issues don’t happen but going in and demanding the minimum the law requires will get you the minimum. Get the school on your side and you get the maximum. I’m thinking of a player on the golf team last year that we would do anything for. The parents were wonderful to work with and we appreciated all of their support.

Very helpful advice. Thank you!

[StrangeSox]

Even if you talk with the administration and counselors, make sure you talk directly with his teachers as well. The appropriate information doesn't always get passed down to them even if legally it has to.

[Texsox]

Even if you talk with the administration and counselors, make sure you talk directly with his teachers as well. The appropriate information doesn't always get passed down to them even if legally it has to.

 

Absolutely. A friendly email to get the ball rolling is really helpful. I especially like knowing the things that might not be noticable and any strategies that have worked and any that have not. Any competent teacher wants the same thing that parents want. What is best for the child. The very best parens that I have worked with would jot regular, short emails, alerting me to and problems and also alerting me to what has been positive. Actually, I appreciate that for all my students.

 

Also, if appropriate allow the teacher an occasional opportunity to correct any mistakes that may have been made. I have 125 students and do make mistakes. Once I know about them I will correct them quickly to the best of my ability. I know other teachers would appreciate the same opportunity. I do stress occasional and when appropriate.