Is it possible for someone to become lower functioning?

My daughter was diagnosed with PDD-NOS when she was 2.  She will be 23 this month.  She was low functioning at first but with a lot of therapy she improved.  At age 7 her psychiatrist said that if I had brought her in for diagnosis then instead of when she was younger, she'd have an Asperger's Syndrome diagnosis.  At age 14 she had a psych eval that changed her diagnosis to high functioning autism.  She graduated high school with some special ed support, not a lot, and an advanced studies diploma.

But as an adult, she is not able to do adult things.  I have had to play helicopter mom with her work more than a few times, present myself as her disability advocate, because she can neither express what she is thinking nor can she understand what is said to her when it comes to things that are not routine.  She's smart, she has an excellent vocabulary, but putting together or understanding the words when it involves difficult or unusual concepts she just can't do.  This involves both abstract and concrete things, like setting up direct deposit.  She couldn't live independently because things like budgeting or knowing when to call the landlord to fix something or what to do in cases of emergency she just can't grasp.  One night I came home to a busted water pipe that had been pouring water for a couple of hours.  She didn't know what to do so she waited for me to come home rather than call emergency maintenance or even call me so I could walk her through calling emergency maintenance.  She has a boyfriend but it's clear it's more the 13 year old holding hands type of relationship instead an adult relationship because developmentally she's not there yet.  She has tremendous difficulties in getting jobs because stressful things like job interviews really bring out her social and communication difficulties that aren't apparent during small talk situations.  I can't count the number of job interviews she's had and she only succeeded in getting a job when I found out that she wasn't self-identifying as disabled and coached her on how to tell the interviewer she's disabled in a way that affects communication and socialization.

It just seems like things have gotten worse after high school.  She completely digs in her heels when it comes to doing something like getting on MeetUp because she has a high level of paranoia about how people will treat her, so she is fairly isolated except for internet friends.  I don't know if the isolation has caused a regression.  I don't know if I'm expecting too much from her as far as adulthood behaviors because every time she's been tested her developmental level and her social/emotional level have been exactly 2/3 of her chronological age.  (When she was 18 months old she tested as a 12 month old, when she was 12 she tested as a 8 year old, etc.)

The department of rehabilitative services had her tested recently to see if she qualified for services.  They categorized her as severely impaired in several life skills areas; we have an appointment soon to discuss services but I already know she's considered by them to be impaired enough that she will bypass the wait list.  Seeing how it was their doctor that categorized her and everyone knows that the government's doctors tend to minimize what they can to save agency budgets, she has to be pretty bad off.

I hear of adults that live independently, that are married, that are successfully raising kids, and she's nowhere near that level of functioning.  I read the new DSM stuff and her vocabulary and IQ would place her as high functioning.  But I'm wondering if it's possible that she went from high functioning back down to moderate functioning because she's clearly not able to do things that adults normally can do.

  • marianne van der Arend
    many of us, progress slowly.

    I got a child with 28. that day, when I look at him. I first felt love. erst 5 jahre later I gave the feeling a name and wrote a poem about motherlove.
    After getting my son. my most important goal was to learn to be the mam I allready was. So I learnt from everybody, because the need was there.
    you cant believe how many people help me, to get this goal.
    because all people have the skills, which are hidden to us. so finding out what failes is extremely difficult as well, finding a way to learn it for your self and take it in your system.

    so still with 44 years of age.
    I learn.
    like you are still learning of life.
    but some things I learn from my children. so I learned lately why people talk rubbish about oder people, it was big surprise to me. that they uplift their feeling about theirself, talking negative about others. that this can exist between people I couldn't believe till I recognize it and my son give me the right explanation about what I saw and heard.

    so life is oft still very strange to me.

    we people are happy (all) when we have the skills to cope with our environment.
    for autistic people it is necessary to keep the envirement so less complex that we can live with it.

    so learning on a school or even a univerity has a purpose. you have a book. you learn it, make exam.
    living, is taking responsibility, deciding, have opinion, know what to do.
    respect feelings, have your own feelings .......................... and much much more.

    so hope you see your doughter growing up more and more.
    when she has goals of her own.
    it stimulate her to grow and learn.

    it's very frustrating being not good enough for a job. I was there. it hurt me very much. I studied to be a teacher geography (schools are good place to give explanation, I love this). And loved my subjects, loved explaining to the students.
    but there was more my collegues and management expected from me. and the stuff I goodn't cope with I didn't recognize.
    I thought, I should do it all. but why I couldn't I didn't understand. many things I solved very out of the box. but still made to many mistakes and loose job.
    and work 3 times harder then normal and got exausted then und wenn.

    when I got my son. after a year I was unable to do anything anymore. had asked to much of myself.
    Yet for 10 years allready as work without payment I give presentations about autism. and support loads of people on their ways to understand autism. I have a rente from my job, but hope to make new career out of this. and am good on the way.

    i tell you because for many of us, having something we really go for, is the only chance to know everythiing.
    have all the details and all the coherenz for this one subject.
    more easy to be a spezialist.
    then to do what is expected from normal people, so many things (to much)

    hope in my story, there is some information that you can use.
  • marianne van der Arend
    many of us, progress slowly.

    I got a child with 28. that day, when I look at him. I first felt love. erst 5 jahre later I gave the feeling a name and wrote a poem about motherlove.
    After getting my son. my most important goal was to learn to be the mam I allready was. So I learnt from everybody, because the need was there.
    you cant believe how many people help me, to get this goal.
    because all people have the skills, which are hidden to us. so finding out what failes is extremely difficult as well, finding a way to learn it for your self and take it in your system.

    so still with 44 years of age.
    I learn.
    like you are still learning of life.
    but some things I learn from my children. so I learned lately why people talk rubbish about oder people, it was big surprise to me. that they uplift their feeling about theirself, talking negative about others. that this can exist between people I couldn't believe till I recognize it and my son give me the right explanation about what I saw and heard.

    so life is oft still very strange to me.

    we people are happy (all) when we have the skills to cope with our environment.
    for autistic people it is necessary to keep the envirement so less complex that we can live with it.

    so learning on a school or even a univerity has a purpose. you have a book. you learn it, make exam.
    living, is taking responsibility, deciding, have opinion, know what to do.
    respect feelings, have your own feelings .......................... and much much more.

    so hope you see your doughter growing up more and more.
    when she has goals of her own.
    it stimulate her to grow and learn.

    it's very frustrating being not good enough for a job. I was there. it hurt me very much. I studied to be a teacher geography (schools are good place to give explanation, I love this). And loved my subjects, loved explaining to the students.
    but there was more my collegues and management expected from me. and the stuff I goodn't cope with I didn't recognize.
    I thought, I should do it all. but why I couldn't I didn't understand. many things I solved very out of the box. but still made to many mistakes and loose job.
    and work 3 times harder then normal and got exausted then und wenn.

    when I got my son. after a year I was unable to do anything anymore. had asked to much of myself.
    Yet for 10 years allready as work without payment I give presentations about autism. and support loads of people on their ways to understand autism. I have a rente from my job, but hope to make new career out of this. and am good on the way.

    i tell you because for many of us, having something we really go for, is the only chance to know everythiing.
    have all the details and all the coherenz for this one subject.
    more easy to be a spezialist.
    then to do what is expected from normal people, so many things (to much)

    hope in my story, there is some information that you can use.
  • marianne van der Arend
    many of us, progress slowly.

    I got a child with 28. that day, when I look at him. I first felt love. erst 5 jahre later I gave the feeling a name and wrote a poem about motherlove.
    After getting my son. my most important goal was to learn to be the mam I allready was. So I learnt from everybody, because the need was there.
    you cant believe how many people help me, to get this goal.
    because all people have the skills, which are hidden to us. so finding out what failes is extremely difficult as well, finding a way to learn it for your self and take it in your system.

    so still with 44 years of age.
    I learn.
    like you are still learning of life.
    but some things I learn from my children. so I learned lately why people talk rubbish about oder people, it was big surprise to me. that they uplift their feeling about theirself, talking negative about others. that this can exist between people I couldn't believe till I recognize it and my son give me the right explanation about what I saw and heard.

    so life is oft still very strange to me.

    we people are happy (all) when we have the skills to cope with our environment.
    for autistic people it is necessary to keep the envirement so less complex that we can live with it.

    so learning on a school or even a univerity has a purpose. you have a book. you learn it, make exam.
    living, is taking responsibility, deciding, have opinion, know what to do.
    respect feelings, have your own feelings .......................... and much much more.

    so hope you see your doughter growing up more and more.
    when she has goals of her own.
    it stimulate her to grow and learn.

    it's very frustrating being not good enough for a job. I was there. it hurt me very much. I studied to be a teacher geography (schools are good place to give explanation, I love this). And loved my subjects, loved explaining to the students.
    but there was more my collegues and management expected from me. and the stuff I goodn't cope with I didn't recognize.
    I thought, I should do it all. but why I couldn't I didn't understand. many things I solved very out of the box. but still made to many mistakes and loose job.
    and work 3 times harder then normal and got exausted then und wenn.

    when I got my son. after a year I was unable to do anything anymore. had asked to much of myself.
    Yet for 10 years allready as work without payment I give presentations about autism. and support loads of people on their ways to understand autism. I have a rente from my job, but hope to make new career out of this. and am good on the way.

    i tell you because for many of us, having something we really go for, is the only chance to know everythiing.
    have all the details and all the coherenz for this one subject.
    more easy to be a spezialist.
    then to do what is expected from normal people, so many things (to much)

    hope in my story, there is some information that you can use.
  • marianne van der Arend
    many of us, progress slowly.

    I got a child with 28. that day, when I look at him. I first felt love. erst 5 jahre later I gave the feeling a name and wrote a poem about motherlove.
    After getting my son. my most important goal was to learn to be the mam I allready was. So I learnt from everybody, because the need was there.
    you cant believe how many people help me, to get this goal.
    because all people have the skills, which are hidden to us. so finding out what failes is extremely difficult as well, finding a way to learn it for your self and take it in your system.

    so still with 44 years of age.
    I learn.
    like you are still learning of life.
    but some things I learn from my children. so I learned lately why people talk rubbish about oder people, it was big surprise to me. that they uplift their feeling about theirself, talking negative about others. that this can exist between people I couldn't believe till I recognize it and my son give me the right explanation about what I saw and heard.

    so life is oft still very strange to me.

    we people are happy (all) when we have the skills to cope with our environment.
    for autistic people it is necessary to keep the envirement so less complex that we can live with it.

    so learning on a school or even a univerity has a purpose. you have a book. you learn it, make exam.
    living, is taking responsibility, deciding, have opinion, know what to do.
    respect feelings, have your own feelings .......................... and much much more.

    so hope you see your doughter growing up more and more.
    when she has goals of her own.
    it stimulate her to grow and learn.

    it's very frustrating being not good enough for a job. I was there. it hurt me very much. I studied to be a teacher geography (schools are good place to give explanation, I love this). And loved my subjects, loved explaining to the students.
    but there was more my collegues and management expected from me. and the stuff I goodn't cope with I didn't recognize.
    I thought, I should do it all. but why I couldn't I didn't understand. many things I solved very out of the box. but still made to many mistakes and loose job.
    and work 3 times harder then normal and got exausted then und wenn.

    when I got my son. after a year I was unable to do anything anymore. had asked to much of myself.
    Yet for 10 years allready as work without payment I give presentations about autism. and support loads of people on their ways to understand autism. I have a rente from my job, but hope to make new career out of this. and am good on the way.

    i tell you because for many of us, having something we really go for, is the only chance to know everythiing.
    have all the details and all the coherenz for this one subject.
    more easy to be a spezialist.
    then to do what is expected from normal people, so many things (to much)

    hope in my story, there is some information that you can use.
  • marianne van der Arend

    In reply to marianne van der Arend:

    I'm very sorry. about that my writing is there several times. I thought I did something wrong, and then try again and again.
  • Ocean
    Hi! I'm a mom with a 24 year old son with autism spectrum disorder.

    Sounds like you are doing a great job figuring things out...knowing what your daughter can and cannot do so that is half the battle!! And you are doing a good job working on getting her services!

    I'm not sure it is regression but maybe developing so slowly in various areas or not at all in other areas(understanding legal paperwork, home living). So in kindergarten they may be sort of ok/on level with non-disabled peers, but as life gets more demanding, sometimes our children simply do not develop at a rate to keep up. So maybe it is not so much regression as the demands of adult life getting way ahead of our adult children's abilities. I will say that my son keeps developing in some areas but other areas seem just stalled...maybe will remain at that level of functioning for life.

    The things you are talking about seem to be common with adults like our grown children with autism...resistance to social things, inability to do a lot of adult things like home maintenance and overseeing repair, inability to do any kind of legal paperwork like leases. My son could never set up direct deposit or get a job on his own, interview on his own etc. My son is very smart also, can learn facts etc. but has all the deficits in executive function, social, understanding activities of adult life etc. in autism which are very necessary for the demands of adult living.

    My son has just been through the whole process of eligibility for home based services and getting funding because my son will need supports to live and work in the community. He will have a person support worker to help him with the things he needs help with. An agency will provide the case management and personal care worker.

    The department of rehab services in my state not only provide contacts for job sites but also provide a job coach to help with interviewing and on the job. They should do similar things for your daughter. They should be able to get your daughter placed in a job and support her there. My son started with a job placement through his high school multi-needs program and had a job coach for the first couple of years and now he is ok there. Some people continue to have a job coach and that is ok.

    Not sure where you live, but there are a variety of housing choices with different levels of supports. My son will not ever drive, or live like non-disabled adults. But he is independent with his daily living skills (can do his wash, iron his work clothes, cook (heat up) his food, clean, daily hygiene, manage his medication) and will be able at some point to have his own place with supports.

    It has helped my son and I to figure out where he is at on different things and then to try to figure out the environment and supports he needs to live as he is right now. We will be working on transportation and some community skills, but areas like choosing not to have friends etc. may just be what they are. Not really regression, just not able to do a lot of adult living things.
  • newnoz
    I apologize for the length of this. Take what might be meaningful to you and leave the rest. Hope i didn't post this twice.

    Fear is a horrible thing. Autistic people feel a LOT of fear, if Temple Grandin (and my experience) is/are to be believed .
    Is pushing a child before she is ready is worse than not pushing her at all? I don't know. Your question stimulated a lot of questions in myself. I can't judge what you are doing because I'm not sure i did it right. I pushed my son and he is is an angry bitter man to me and he will have nothing to do with me or the rest of his family.

    Yet he is independent according to the world's view. He is also a father in his mid forties who has a ASD son and possibly and asd step daughter.

    In one sense why the heck should you listen to me? I have no first hand idea of your living situation. I am a 65yo woman who has a ASD diagnosis and while i have lived independently and even raised children i sure made a lot of mistakes. No one knew that either i nor my son had autism then so you are ahead of us here.

    I also know that i for one am living with PTSD from my childhood and adult experiences of rejection and bullying. I suspect a lot of what is called all sorts of other things in ASD folks is PTSD. The key thing for me is that it is a fear of people and inexperienced situations. I still need someone to go to events and places with me sometimes.

    I know about having dreams for one's children but right now it's pretty darn hard out there IMHO. I'd say neither of my children lived up to my dreams but it is their life and not my business. I can see why, if she lives with you that your goals for her would be a part of the dialog. You don't mention her goals for herself because that is where you might eventually get some traction. Her goals may not have anything to do with other people right now. Looking back i note that mine seldom did either. My life revolves around home , online, Toowoomba Clubhouse, Al-Anon (which is where i am the most comfortable) and art. What all these places have in common is that they are all accepting of people without any limits of who they are so long as I am not making other's fearful or something extreme like that. Even then i know they would let me return once i got back on solid ground.

    It took a LOT to get me to walk through those doors and it still does. Each of them is a piece of my puzzle. I have not stopped looking. I am incredibly grateful to all those people and places for letting me have real friends even if i had to wait most of 55 years to do it. I still fear my next meltdown will lose what have gained but the less i fear the fewer the meltdowns. For me meltdowns are an extreme form of panic attack and occasionally anger/self righteousness after i decide someone is treating me or another person unfairly. I expect a lot of meltdowns are caused by unfairness of the world. Intellectually i know the world is unfair but emotionally i somehow still expect it to be fair. The last is off topic so i apologize but I will still leave it so i can think about it later.

    One last place i feel accepted and understood is with other ASD people. Even when we argue we usually communicate with others pretty well. That is my experience at least. I had to start with finding places who accepted me emotional "warts" and all.

    One last thing is that I've had the privilege of watching my stepson's who are all ASD people grow into young men and they are amazing. Their mother was told to let them decide when they were ready for something. For the most part she listened. They are in their late teens and early twenties. They live at home but they make progress. The only question i have is this: Is there ANY area where your daughter is making progress? My attitude now is It is possible to build on a positive but not a negative.

    I have no idea if this will help or just confuse you. i hope you give yourself credit for all the good things that have come in a relationship that wasn't what you were looking for when you had a baby but one that matters so much to your very valuable and beautiful daughter.
  • newnoz

    error

  • newnoz

    error fix

  • newnoz

    this was the only way i could fix the error.  I reposted because the program told me it was not posted yet.  After posting 6 times it posted all of them . At least that is how it looked to me.    

  • newnoz

    error fix