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Reflections on Independent ASD and Parent Meeting

November 29, 2018

Thursday November 29, 2018,Reflections on Our Meeting


A small, but passionate & articulate group of parents gathered to talk about our ASD adult children, their issues and lives, and our lives with them, as we try to guide them to independence.

 Based upon our 5 key issues:  Post-secondary education, Employment, Housing,Life & Social Skills, and Mental Health, I compiled a collection of concerns and examples, to provide food for thought. We didn’t cover all of the list below, but we can certainly do this again. (See this list at bottom)

We found that, while everyone could recognize many aspects of the examples provided in their kids’ lives, ASD is truly a Spectrum. Even within our sector of the ASD population, the range of personalities and type of issues that they struggle with are huge! Parents are having to meet their kids where they are at, and are not necessarily able to work on more than one or two issues at a time. Some families are focused on post-secondary education, realizing that their gifted young adults would never be content working at a “Mac-job”. These families are concerned with the discipline, organization & healthy living challenges that will be required for success at University. Other families are working through the issues that surround independent housing. For these families, this might not be the parents’ first choice issue, but “leaving home” is upper-most in the minds of their young adults, who are not succeeding in school or employment at the moment. So,helping them to live safe and healthy lives on their own is still a win on the path to independence. Others feel that, given that their son or daughter knows and wants a job (for the money, and a sense of purpose), the path to reaching their adult is through employment – and this becomes the families’ focus. The challenge for these families has been in finding customized employment services that will follow the young adult in exploring employment, leading them to the skills training that they require, and helping them to integrate into the job,once employed. Some families have young adults who are quite social with a range of friends, others have a social group built around a particular niche interest, and some are painfully lonely, and feel very isolated from other young adults their age, leading to dysfunction in other aspects of life, such as work and school. All families feel that mental health and appropriate employment services that would have helped them have been unavailable or unaffordable or both.

“Motivation” was a concept that was discussed. Employment and social skills programs require that our adults be“motivated to participate” or “coach-able” or “open-minded”.  The problem for us, as parents, is that by the time our adults are in their 20’s (or older), they have been criticized,bullied, and are often cynical, at best, or clinically anxious or depressed. Added to this, autism inherently implies a certain rigidity and inflexibility of thinking. Furthermore, being asked to change one’s behavior is hard for anyone.So, what to do?

I have seen that our son is motivated by success – tough love is not a concept that works for him. So, Dr. Bailey’s pearl of wisdom that development, for our ASD individuals, is protracted, means that we need to understand and convey to our young adults that becoming fully independent will take longer than it will for others, and that this is OK. If we can, slow things down for them – their entry into full time employment, the number of post-secondary courses that they take each year, the number of activities that the take on, to ensure that they do well, and are not overcome with anxiety. Can we break goals down into small achievable steps, so that they can see small gains as wins enroute to a larger goal? Is the first question we ask of post-secondary institution or employer be – can we do this program part-time, or ease into employment over several months or a year?

One family suggested that money maybe the only way to motivate some individuals. If having money in their jeans is a motivator for our kid, then should we consider paying them to participate in counseling or attending an employment or skills training program, in the hope that once there, they will engage and learn the skills being offered?

For our really bright kids, who have a goal that they want to achieve – say, an engineering, law degree, or a particular type of job – say, medicine or mathematics professor- can we ask for behavioral “proofs”, tapping into their rationality, to get them on board? For example, can we talk to them in a calm moment, and tell them that for us to be willing to financially support their goal, they must demonstrate their self-discipline and self-control through certain behaviours, ie, by adhering to agreed-upon financial or domestic responsibilities?

This week I have been in contact with family friends who have an adult son struggling with addiction. The helplessness that this family feels is not unlike how we feel at times. Here is what the Mom has written to me on the topic of motivation:

“If there’s one thing I’ve learned about addiction in the past five years it’s that until an addict wants to go clean there is very little others can do…(Our son)… has never stayed with help and support – and he has had access to a lot of it. It’s pretty stunning the number of doctors, counselors, support groups etc he as walked away from. We are doing what all addiction counselors tell parents to do – take care of yourselves and don’t let the addiction bring you down…So we go on living and we still find joy and make plans… So many people live with some kind of sorrow in their heart. It’s part of the human experience.”

I am thinking about building success through working from where our son is at right now, and to celebrate what he is doing well. We can only work on future goals as long as he feels hopeful about life and is willing to work with us. So, I am wishing you all insight into yourselves and your kids, so that you can find some ways to better “motivate”your kids and yourselves in 2019. 

Wishing you and your families all the best over Christmas and in the New Year!

Joette, and all of us at Square PegSociety  

Issues & Stories (Compiled from books and tales told to me)

Finding My Path After High School:

Blanca is 23 and single, living with her parents & brother. She has trouble sleeping – her alarm rings at 7am,but often she is awake as early as 5am, even though she goes to sleep at midnight. She has morning classes at University, where she is studying Marine Biology. As she has a 45 min transit ride to school, she has to get up, but feels tired, anxious and consequently, often forgets things that she needs for her day. As she packs her bag she has trouble finding things in her very messy room.

Arnold is an 18 year old college freshman, living in a dorm. He dreads the evenings because his roommates invite their friends in and are noisy. For the most part, his roommates and their friends ignore him.

Issues that arise around post-secondary education:

  • I have trouble managing my time.
  • I can’t fall asleep at night, so stay up late, then have difficulty getting up in the morning.
  • I am always worried about doing well– getting the grades I want, and getting my assignments done.
  • Sometimes I feel really overwhelmed,but would rather fail than get help at the Centre for Students with Disabilities.
  • I can’t concentrate at the University because it is too noisy, the lighting is awful, it is too hot/cold/smells bad.
  • My profs seem annoyed by the questions that I ask, and I always seem to end up having conflicts with them.
  • I can’t get to know other students –they always seem too busy, or are already in their own groups.

Henry is 29,has a BA in English, but has been unemployed for 6 years. He has been looking for work through online ads. He lives with his father, who is critical toward him for not having found work. Henry feels pressured about work, but doesn’t get much done at home alone while his father is at work; they often argue when his Dad gets home.

Margaret is an endocrinologist and works in a practice with several other physicians. At lunchtime she would prefer to eat alone, but due to a shortage of office space,she is forced to use the staff lunch room. She tries to be polite to others also eating there, but has never felt comfortable making small talk. She is not quite sure what to say and doesn’t enjoy the topics that come up in conversation. She has received feedback from the office manager that she is not well liked by the staff.

Issues that arise around employment:

  • I can’t find a job and don’t know where to begin to look.
  • I get so overwhelmed with the job search that I avoid looking.
  • I get so nervous at job interviews,that I never get called back.
  • Sometimes I think the interview went well, but then don’t hear back from the employer. I don’t understand what went wrong.
  • I can only find low-level jobs where I can’t use my talents.
  • I can’t concentrate at my workplace because it is too noisy, the lighting is awful, it is too hot/cold/smells bad.
  • I can’t seem to organize myself/work to be able to get everything done.
  • I am anxious about not doing well at my work, displeasing my supervisor, or not fitting in with others.
  • I am reluctant to ask for help because my supervisor always seems busy, and/or my supervisor gets annoyed when I ask a lot of questions.
  • I get irritated with coworkers,supervisors, and/or customers.

Living Alone & Together

Jake is single,20, and living with his parents. He recently dropped out of community college after only two semesters and now works part-time in the dairy department of a grocery store. Recently, he got his driver’s license, but is not comfortable driving, and taking transit to work is complex and time-consuming. His stress over getting to work is at times so great that he calls in sick. He does not want to admit this to his parents, but his anxiety over driving and transit contributed to his decision to quit college.

Noel, 37, lives in his own apartment and works as a computer programmer. Evenings and weekends are very lonely.

Dan is an information technologist at a hospital. Dan is overweight, has a family history of heart disease, and has been told by his doctor that he needs to lose 40 lbs.He has had a girlfriend for about 3 years who also makes occasional comments on his weight. Dan knows that he has poor eating habits but is overwhelmed with the idea of changing his routine. He is not even sure what his first step should be toward organizing a weight-loss plan, and continues to eat the same poor quality foods, feeling guilty while doing so.

Issues that arise around Living with others:

  • I don’t keep up with laundry,cleaning, personal hygiene.
  • I don’t get enough alone time,privacy.
  • My family/roommates have too many guests – I feel uncomfortable having to socialize all the time.
  • I argue a lot with my parents/siblings/roommates.
  • My family/roommates get annoyed with my behaviours and habits (eating, sleeping times, excessive tidiness,messiness, etc).
  • I get annoyed with others’ behaviours and habits.

Issues that arise around Living Alone:

  • It takes a long time for me to plan& prepare a meal, so I resort to ordering in or eating out a lot, which is both expensive and not very healthy.
  • I don’t keep up with laundry,cleaning, personal hygiene.
  • I can’t find the time to exercise/I get obsessed about my diet/exercise routine.
  • I am very lonely, and often don’t talk to anyone other than at work.
  • I seem to misplace a lot of things(wallet, keys, purse, etc).
  • My family worries that I will leave the stove on, or forget to turn off the faucet in the bathroom.
  • I have not always lived within my budget; my parents have on several occasions made good on my credit card debt.

Finding Happiness – Relationships

Fred, 31, lives alone and works full time at a bank. Friday nights he gets together at a sports bar with a friend that he has had since high school. However, they often argue– Fred has different opinions about sports from his friend and has been told that he is too aggressive in expressing his views. Sometimes his friend has brought others to join them, but these people often get frustrated with Fred’s yelling. Even his friend has been threatening to quit their Friday night get-togethers.

Arnold wants to make friends, but is very shy. He has always tried to “disappear” when around kids his own age, a habit that protected him from bullies in high school. Now,as an adult, he wants to be more sociable, but doesn’t know how to start conversations, and even when he thinks of something to say, he is too scared to try.

Noel would like to get married and have children, but has had no success with dating. He is frustrated because he feels that he is doing something wrong in terms of relationships, but doesn’t know what it is.

Robert would like to be able to run his own errands, and to have his own activities, such as going to the bank, shopping or joining a gym. However, in the past he has relied on others to speak for him, and so doing these things on his own makes him highly anxious. But now he is motivated to become more independent because he does not enjoy hanging out by himself at home most of the time.

Carla is 34 and married. She enjoys sexual activity, but finds that being held tight outside of sex, for long periods of time, makes her feel claustrophobic. Her husband is affectionate, and feels hurt when she rejects his hugs, resulting in arguments between them. She finds herself avoiding contact with him.

Issues that Arise Around Relationships

  • I don’t know where to look to find friends.
  • I feel my interests won’t interest others my age, but I don’t want to pretend to be somebody else in order to make friends.
  • I don’t know how to join in when it looks like everyone knows each other.
  • I don’t know how to turn acquaintances into friends who will want to do something with me on the weekends.
  • I have sometimes been told that I sound “nerdy” or like a “know it all”.
  • I’m not sure that I can distinguish between a true friends and someone who is using me.
  • I feel depressed that I will never have friends or a relationship.
  • I don’t know where to meet potential dates, and don’t feel comfortable in crowed places, like parties or bars.
  • I am too afraid of being rejected to ask someone for a date.
  • I am intimidated by social networking sites, and have tried online dating services, but never got a date.
  • I have begun a few Internet relationships, but they have all fallen apart after meeting.
  • I am embarrassed about being a virgin at my age.
  • I doubt that I could trust that another person can accept me as I am; this inhibits me from becoming intimate with anyone.
  • I get so upset when my partner is annoyed with me that I freeze and don’t know what to do or say.
  • My partner tells me that I am insensitive.
  • My partner blames all of our problems on ASD, and it makes me feel guilty.

Additional Material

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