For those of us with Young adult difficult child's. A little insight.

Discussion in 'General Parenting' started by Fran, Jan 26, 2009.

  1. Fran

    Fran Former desparate mom

    These are two excerpts from a book I just started reading "Adults on the Autism Spectrum Leave the Nest" by Nancy Perry. I am excited to get further into this book. So far, it is taking my breath away at the description of my son.

    'The executive functions are so important that they alone allow us to live as 'normal human beings'
    They include abstract reasoning and problem solving ability. They allow us to imagine the future by predicting the consequences of current actions. They allow us to initiate behavior purposefully, and to monitor our behavior while we are simultaneously moving fluidly through decision making, planning, organizing. And sequencing the steps toward a goal. They allow us to use foresight, hindsight, and insight. In the broadest use of the term, the executive functions also encompass regulatory functions such as the regulation of attention and concentration, and the regulation of emotional states.

    It will be easier to understand disability of the executive functions if I paint a picture of an individual with deficits in the long list of skills mentioned above. An individual with executive impairments lives in the moment. This is because he or she can't organize their lives or carry out plans, and can't think about the consequences of their behavior. Not being able to imagine consequences leaves him or her open to doing things on impulse that can have disastrous results, socially and even legally speaking. Also, they have poor short term memory so they forget plans and commitments, thus disappointing others unintentionally, and failing to meet all kinds of obligations. They have impaired attentional systems so they may be either highly distractible or, at the other end of the continuum, perseverative, or 'sticky' compelled to spend long periods of time doing the same thing, like watching TV or listening to the same music over and over. They usually want close relationships, but they don't know how to treat others and have never had normal childhood friendships.

    These individuals are close to their parents because of their failure to make friends, but they assert their right and desire not to be controlled by their parents , even as they make poor decisions over and over again. Money is like water in their hands. They make the same mistakes with money repeatedly, never learning from experience, although they 'talk a good game' and can make up very believable excuses for their behavior. Except in truly autistic individuals, all these failures occur alongside virtually normal verbal skills. The conversation, at least the superficial conversation, of these individuals sounds so normal that others expect normal behavior from them. However, they fail over and over again in meeting this expectation.

    This is my description of individuals with executive function impairments based upon years of working with them as they go about their daily lives. Researchers tend to prefer a more circumscribed definition of executive functions, emphasizing working memory and organizational abilities. I will make the case for including all these skills and abilities under one label at this stage of our understanding. I take this position because I've seen the way individuals function when they are impaired in all or most of the above mentioned skills. The skills must be available to be used in a coordinated manner, as a group and people who are impaired are generally not dysfunctional in just one skill, like working memory, but in the whole array of skills. Also, people with these impairments function similarly to one another, even if etiologies, that is the organic causes, of their disorders are very different. Because of their similarities, people with significant executive impairments ought to be members of a diagnostic category of their own.'

    Ms. Perry speaks to the fact that it is easier to train a young adult with Down's than one with the executive dysfunction.(my thoughts exactly).
    Below is an excerpt from a very interesting chapter of why our young adults do not engage in their own lives.

    'Initiation may be one of the most difficult executive functions to comprehend. Even the word 'initiation' seems vague. It is related to the concept of taking initiative, but it is more basic. It really means having the ability to start anything at all without assistance from outside oneself. '

    I am in the early part of this book but it has been right on with it's description of what my life is like living with difficult child. I highly recommend it for many of us.
  2. dreamer

    dreamer New Member

    fran....thank you! I will seek out this book. while my difficult child carries only BiPolar (BP) & anxiety diagnosis many of her docs considered High-Functioning Autism (HFA). I always felt autism spectrum fit & that excerpt applies. souunds like it can help. thanks.
  3. rejectedmom

    rejectedmom New Member

    Fran, Both of my boys fall into this catagory. One is barely managing and still at home the other went ary and is now caught up in judical obligations and programs living in a group home.

    I too will read this book and pass it along to my husband. I wonder if the author gives any advice to us parents about how to help them when they are so inssistant on doing it themselves?
  4. Fran

    Fran Former desparate mom

    RM, the books index shows chapters on Model Program of Supported Independence. I am hoping it is as helpful as the first few chapters have been. I must say I am sheepishly embarassed at the grief I have given difficult child about not modeling behavior and not remembering what the consequences have been. My frustration has been very evident in the last few months. I have disengaged but it's not really been helpful to difficult child. Seems I need a refresher course on loving and researching how best to help my son.
  5. Nomad

    Nomad Guest

    Thank you! Seems like it will be helpful for many of us here!:D
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Yup. That's why I would never force my son to live completely in his own place with no supervision. I feel that for MY particular boy it would be cruel. He can do most things himself, but he does need a little help, and he WANTS that help. He also has problems with executive function and, although he may mature A LOT, his executive function deficits will not clear up. Our goal for him right now is an assisted living apartment where he can pretty much live his own life, he he'd probably have a matched roommate and a social worker to make sure he's A-ok. The goals I had for my other kids are not the same as for this one. He is different, and that's ok.
  7. SearchingForRainbows

    SearchingForRainbows Active Member

    Although difficult child 1 is so much higher functioning than difficult child 2, I see some of both of them in this description. It is making me think... Thanks for sharing!

    Fran, don't be too hard on yourself. in my humble opinion, parenting difficult children has to be one of the hardest jobs on earth!!! WFEN
  8. busywend

    busywend Well-Known Member Staff Member

    Oh Fran, I see my girl all over this description. Thank you for posting it. I, too, am feeling like I need to bone up on my patience and teaching skills.
  9. Fran

    Fran Former desparate mom

    WFEN, thank you but I believe I become a better person/parent when I pause for self reflection and take stock of my attitude. I take good care of myself but as difficult child gets older I find I shift my attention away from his needs since I don't seem to be able to teach him. I need to still be somewhat sympathetic to how hard life is for difficult child and for us.

    MWM, the author believes our difficult child's need to be out of the house in an appropriate living environment with their peers.

    I have covered so many bounced checks that it's embarassing. He does it over and over and promises to not do it again then forgets. He has suffered many consequences but to no avail. He isn't a hard guy and it never made any sense but I see more that it isn't just him and it isn't that I didn't raise him right.

    Nomad, I'm sure all of our adult difficult child's who suffer from some level of this aspect of disorder could benefit.

    Wendy, it's a shock when I read this far into the book to hear her describe my son. I am thirsty to read more and more. I wish I could go off and just finish it but life gets in the way.
  10. flutterbee

    flutterbee Guest

    My daughter is nowhere near an adult, but that author hit on Executive Functions so well, I'm going to get that book. I'm sure there are things that I can use now, as well as in the future.

    Thanks for sharing.
  11. totoro

    totoro Mom? What's a GFG?

    Wow, even though K is only 7, this sounds like things I could still benefit from! Even now. The descriptions are so close to home even at this age.
    It is never too early to help set her up for success!!!
    I am such a firm believer that most of these disorders over lap in so many ways.
    Thank you
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Fran, yeah. It's going to be so hard to have him leave. I am thinking of the assisted living because it IS a community and the young adults come and go and work. And he IS going to get a license. If nobody supervises him at all, he'll just sit home (not wash or anything) and play videogames. I don't think this will change as he gets older. He has always been this way. I think the case manager, or whatever he's called, either checks in once a day or a few times a week. I don't want my son to be allowed to isolate, which would happen if nobody pushed him. Also, he will need help with checks and stuff....thanks for the article.
  13. Allan-Matlem

    Allan-Matlem Active Member


    hanks for sharing - Executive functions are one of the core skills that we promote when we collaborate and problem solve with kids , using CPS - the explosive child

  14. KTMom91

    KTMom91 Well-Known Member

    Thank you, Fran. I need that book as well.
  15. Janna

    Janna New Member

    Thank you, Fran!
  16. DDD

    DDD Well-Known Member

    Call me cheap :redface: but I'm going to wait and see what specific solutions the author offers. I have Voc/Rehab dangling in the wind as I don't know exactly what to ask for. difficult child is high functioning but I have a feeling that living with GFGmom (yes, I know this sounds terribly negative!) there may be no reason for me to give up my life any more trying to aim him in the right direction. IF he truly is going to need support on a regular basis I may as well try to accept that he is going to live a life below his capabilities and collecting services/money as his Mom sees fit to find.
  17. Marguerite

    Marguerite Active Member

    I'm going to try to dig that one out of the library (husband, if you read this, can you check out the library over the road from you?)

    MWM, don't count on being able to control where your son lives and how he chooses to take his life - I now have a difficult child 1 who is not only very suddenly living independently when I never thought he would, but he is the "man of the house" with a wife to look after. They aren't on the phone, their mobile phones are mostly out of range when home, I really worry about the pair of them trying to cope with the early weeks and months of marriage (and all that it entails) and now he's staring possible bankruptcy in the face.

    In some ways, he's gone further than I ever thought he would. In other ways, it is terrifying and I just want to drag him home (with wife) and fix everything for them both. The last thing I want, is for thie marriage to fail simply because it all got too stressful. But if I step in and interfere, I could precipiate the very thing I don't want.

    It's even more of a tightrope walk than I ever thought I would have to deal with.

    I'm hoping the book can help. If I can, I'll sit down with daughter in law and share it with her, because she is now difficult child 1's primary carer, like it or not.

  18. ML

    ML Guest

    This is a book I need as well!
  19. TerryJ2

    TerryJ2 Well-Known Member

    I want to buy that book.