Five Reasons Autistic Adults Are Top Advocates for Children

The fact is this: we all want the best possible life and the same is something we would want for our children. For some children this may involve a para, speech therapy, individual counseling, and other services. Unfortunately, many children are not given what they need from society to develop to these heights the way others are and when that happens, parents feel they need to be involved and often people with the conditions of the children they advocate for our not heard. Many parents of autistic people and their supporters have said that autistic adults are not good advocates for autistic children. Some say they do not have the same issues facing them that children do, can’t speak for the diversity of everyone on the spectrum, that parents are better advocates as they care most about their children, or that children wouldn’t understand their own situation or that it won’t be relevant to their lives when they grow up. Yet if were honest, the clear picture is that parents have been advocating for their children with autistics being almost completely excluded in the process for over twenty years, and in all this time, very little has changed in the availability of autism services for the autism community as a whole. History, meanwhile, has shown that people affected most by a particular issue have the power to change their situation. Black Americans have succeeded very significantly in reversing segregation laws throughout America. Women have gained the rights to vote, own property, and hold careers, while people with disabilities have been given universal services and the Americans with Disability Act. Autistics similarly, can do the same thing for themselves, for they have five advantages that (most) parents with autism can make them a unique asset to (non-autistic) parents of autistic children.

Common Experiences

                What people ignore about autistic adults is that they have had similar experiences as children. They have experienced segregated education aversive therapies, bullying, etc. Many like me can remember what they had trouble with in elementary school, where adequate supports were not available to me. I remember better than anyone what teachers and paras did, or tried to do for me, because I was there, and I like many other autistic adults, who have for some reason or another, been in segregated education for the reasons that we were unable to keep up with our non-autistic peers on account of our different abilities. I have heard parents comment, through social media and other forms, on how autistic people from autistic-run organizations such as the Autistic Self-Advocacy Network, the Autism Women’s Network, the Global and Regional Asperger Syndrome Partnership, and the Aspergers Association of New England, have been instrumental in giving parents information on autism that they are able to use to help their children’s progress and argue with legislators for adequate supports for their children.

Common Needs

                As an autistic person, I know what is stressful for me and what makes certain tasks difficult to perform. As autistic people, we know that being socially active can be difficult because the planning can be stressful, whereas most neurotypical people I know would simply assume I don’t want to get out and be social. We can also stress over changes in routine because we like predictability, yet most people I know used to say autistic people were simply rigid because they have not heard things from an autistic person’s point of view, but rather professionals, who may be honest and trained, but do not experience life from the point of view of someone who is wired as we are. This has changed somewhat, but a lot of society still has yet to accept our perspectives. Autistics know on some level what distracts or unnerves them, but often times do not know how to communicate it to others.

Common Future Projections

                Disproportionate numbers of autistic adults experience underemployment (or unemployment), divorce, substance abuse, crime, and poverty, all of which could be prevented with early services and interventions. Autistic people are the ones most affected by discrimination, and autistic adults, many with aging parents and with their understanding of their unique needs and condition, are aware of what future struggles today’s autistic children could experience with the right supports. Many have learned to compensate for their differences and have unique perspectives on what autistic children can do and can be taught to help live the best possible live

Common Social Networks

                Autistic people are commonly parents of autistic children. Autistic adults such as John Elder Robison, Sharon daVanport, Jennifer O’Toole, and Bec Oakley have autistic children. Several of them are authors, bloggers, executives, secretaries, and treasurers for material on and resources providing information and services for people with autism. They have the same interest in their children as one would hope for parents to have and the same insider’s view of autism that autistic adults, with or without autistic children have.

Common Identity

                Frequently used rhetoric by autistic self-advocates is that one wouldn’t trust a civil rights organization run entirely by white people or a feminist organization run entirely by men. Autistic people like me don’t just want to be tolerated but celebrated to for our unique contributions to society, such as the inventions of Thomas Edison or the discoveries of Albert Einstein, both of whom were suspected to have autism. Autism is more than just a medical condition for us, but an essential part of who we are just like being Jewish or Greek. We do have to get services from our legislators by pity, which is something that degrades and dehumanizes us all. We understand the need for supports because autism is part of who we are, and it is not just about struggles but also strengths, which autistic people have in fact, been telling the public about for years. Autism supports, just like accommodations for people with learning disabilities, help people like me work to the best of our abilities, not our disabilities, so we can contribute to society in the unique ways that others have before, something that autistics like me have always identified with, what's more making autistic adults great leaders in advocating for autistic children.

Me Casa Su Casa (If I Can Manage it): A Forum on Autism and Independent Living

For my fourth discussion, I wanted to talk about the issue independent living, which is an important issue for autistic people.  This will involve, preparing to and living independently as an autistic person.  As with last week’s discussion, do consider a few things: 1) this forum is not to demean or belittle any individual participating in it, 2) that through this discussion, I hope to learn what sort of struggles and challenges are experienced by people on the spectrum, so we can design better behavioral and educational interventions for autistic people later in life, and to know what autistic people as a whole, do not need help with, and what therapies and interventions are doing right.  If not, we hope you as the readers gain valuable insights into your love life or that of those close to you, but let them all speak for themselves, as their impression may be entirely different from yours, 3) if you not to feel comfortable sharing your name, that is fine, and if you do not want your personal information to be shared without a need-to-know basis (should that be an issue) please mention that at the beginning of your comment.  If sharing your name could create negative consequences or trouble in the life of you or others do not share it, and 4) that bashful and abusive comments are not welcomed and any will be deleted.  Also do not share any information that is too personal (e.g. sex life) using you’re the names or identifying information of yourself or others involved.  5) Remember that everyone may have different views and on all these forums we are not looking for right answers, but to know what you as an autistic person and their loved ones think, 6) If the question is not relevant, feel free to leave it blank; these questions are merely to help each person format their comments.  With that said, here are my questions:

1.       What is your age?  How long have you been living independently?

2.       Are you employed?  How does your job help you live independently?  How do you support yourself?

3.       Are you a student?  How are you able to go to school and still live on our own?

4.       Have you lived on your own before e.g., in college?  How has that affected your ability to live at home now?

5.       How long have you been living on your own?  If you’ve moved from one location (where you live on your own) to another, how long have you lived in each place?

6.       What kind of living space do you live in (apartment, two bedroom house, condominium)?

7.       Where do you live?  Are there supports and facilities for people with autism there?  How can you obtain them?

8.       Have you ever received any services provided for autistic adults to live independently?  How have you gone about doing that?

9.       What sort of lifestyles and careers have your parents/guardians had?

10.   Do you feel that you are socially involved?  How do you get out and how often?

11.   What reasons motivate you to get out of your home and socialize with the larger world?

12.   What sort of diet do you often have for your meals?  Where do they come from (store, restaurant)? 

13.   What do you do to relax?  List anything that is relevant to you (read, drink, video games).

 

14.   Where or who would you go to for help with life, whether independent living, work, school, or relationships?  Have you gone there before?  How often?  Is it helpful?

15.   How do you feel autism impacts your ability to live independently?

16.   Do you have any other neurological or physical conditions besides autism?  What supports have you received for those now and in the past?

17.   What other factors in your life have influenced your ability to live on your own?

18.   What is the easiest or most enjoyable part of living on your own?

19.   What is the hardest or least enjoyable part of living on your own?

20.   Do you wish to change anything about your lifestyle right now?  Are you confident that it will be achieved?  Is it just a desire you have?

Free at Last! Now What? A Forum on College Life with Autism

For my third discussion, I wanted to talk about the issue of college, which is an important issue for autistic people. This will involve, preparing for, attending, and exploring colleges as an autistic person.  As with last week’s discussion, do consider a few things: 1) this forum is not to demean or belittle any individual participating in it, 2) that through this discussion, I hope to learn what sort of struggles and challenges are experienced by people on the spectrum, so we can design better behavioral and educational interventions for autistic people later in life, and to know what autistic people as a whole, do not need help with, and what therapies and interventions are doing right. If not, we hope you as the readers gain valuable insights into your love life or that of those close to you, but let them all speak for themselves, as their impression may be entirely different from yours, 3) if you not to feel comfortable sharing your name, that is fine, and if you do not want your personal information to be shared without a need-to-know basis (should that be an issue) please mention that at the beginning of your comment. If sharing your name could create negative consequences or trouble in the life of you or others do not share it, and 4) that bashful and abusive comments are not welcomed and any will be deleted.  Also do not share any information that is too personal (e.g. sex life) using you’re the names or identifying information of yourself or others involved. 5) Remember that everyone may have different views and on all these forums we are not looking for right answers, but to know what you as an autistic person and their loved ones think, 6) If the question is not relevant, feel free to leave it blank; these questions are merely to help each person format their comments. With that said, here are my questions:

1.       What is your age? 18-24? 24-30?

2.       What is your gender?

3.       How long has it been since you attended college? How much of the time since then has been in college?

4.       What options have you explored before making a decision on colleges or are you exploring now to help influence your decision? What factors have influenced that decision?

5.       When and how in life did you get diagnosed as autistic?

6.       Where do you live outside of college?

7.       Where do you live while attending college?

8.       Do you commute or live on campus property?

9.       Tell us about your college town. Is it a big city, small town? Are you out of the country, studying abroad, a foreign-exchange student, etc.?

10.   What type of residence do you live in during college (dorm buildings, apartment, Greek housing, off-campus)?

11.   Do you work while you are on campus, whether in your home town or near campus?

12.   Do you have any dependents while you attend college, fiancée, spouse, children? Where do they live? How has that affected your college career?

13.   What kind of educational, professional, or independent living experiences have you had prior to your current college career? How have they affected your current college career?

14.   How, in any way, do you feel autism has affected your college experience?

15.   What supports, if any, have you had prior to your college experience? How were they provided to you –the state, parents, family members?

16.   What other conditions to you have besides autism? How have they been accommodated in the past and through what sources? What kinds of supports do you use, find helpful, or have available on your campus or in your area? When and how in your life did you receive the diagnosis for these conditions?

17.   How would you describe your expenses in college? What, if anything comes to mind?

18.   What type of academic program or major are you enrolled in (e.g. nursing, education, social work, undecided)? Do you have any other type of academic commitment, such as a minor?

19.   Where do you feel you can go to get help with things related to your condition on campus or in your area?

20.   How easy do you feel it is to keep up with the pace of college life? Is it too fast? Slow enough? How do you deal with it?

21.   What sacrifices have been made or have had to been made to attend college life?

22.   Have you been involved with a person romantically before college? How has college affected that relationship? What impact have they had on you as an autistic in college and as an autistic person, college student, and person in general? Have you found new love (boy/girlfriend, fiancée, spouse) in college? What impact have they had on you as an autistic in college and as an autistic person, college student, and person in general? 

23.   What type of social networks or supports exists for people with autism on campus or in your area?

24.   Have you found many friendships or close relationships at college?

25.   Where do you go to meet people (friends, potential dates, etc.)?

26.   Have you joined many clubs, societies, or social organizations (e.g. fraternities/sororities, religious organizations, community service outreach programs, etc.)? How has that affected your college life and experience as an autistic person?

27.   How easy do you find it to start on school projects?

28.   Do any of your friends, professors, Greek brothers/sisters, co-parishioners, Community Advisors, Residence Hall Directors, or anyone you associate with on a regular basis know about your condition? Have you told them? How well do you think any of these possible people understand your condition? How open are you about your condition? How might your acquaintances find out? What is there to be gained from disclosing your condition more? Less?  Differently? How do they affect your college life and experience as an autistic person?

29.   What is your favorite or most enjoyable part of college life (academically)?

30.   What is your favorite or most enjoyable part of college life (socially)?

31.   What is the hardest or least enjoyable part of college life (academically)?

32.   What is the hardest or least enjoyable part of college life (socially)?

33.   Have you been in a committed relationship before college? How did college affect it?

34.   What are you most proud of in college? Is there anything looking back that you wish you could have done differently?

35.   Have any major events in your life made it harder or easier to attend college (death in the family, new marriage, new job, etc.)?

36.   What makes you want to persevere in your college career?

37.   What, if anything, ever makes you tempted to give up on college?

38.   How have you changed in any way since college, whether personally, socially, emotionally, professionally?

39.   What do you feel you have gained from college, in both your life in general and as an autistic person?

40.   What more do you hope to gain from college, both in your life in general and as an autistic person?

41.   Is your experience in college what you’ve planned? What do you wish, if anything, you had been able to do differently?

42.   Where do you hope in life to go and achieve after college? How do you believe college is helping you with or influenced that?

Love is All You Need (and Interventions): A Forum on Autism?Asperger Syndrome and Relationships

For my second weekly forum for Autism Acceptance Month, I wanted to discuss love and relationships among people on the autism spectrum. As with last week’s discussion, do consider a few things: 1) this forum is not to demean or belittle any individual participating in it, 2) that through this discussion, I hope to learn what sort of struggles and challenges are experienced by people on the spectrum, so we can design better behavioral and educational interventions for autistic people later in life, and to know what autistic people as a whole, do not need help with, and what therapies and interventions are doing right. If not, we hope you as the readers gain valuable insights into your love life or that of those close to you, but let them all speak for themselves, as their impression may be entirely different from yours, 3) if you not to feel comfortable sharing your name, that is fine, and if you do not want your personal information to be shared without a need-to-know basis (should that be an issue) please mention that at the beginning of your comment. If sharing your name could create negative consequences or trouble in the life of you or others do not share it, and 4) that bashful and abusive comments are not welcomed and any will be deleted. Also do not share any information that is too personal (e.g. sex life) using you’re the names or identifying information of yourself or others involved. For this discussion we welcome all autistic people and their committed partners, regardless of whether they themselves are autistic or not. If both people in the relationship are answering, please answer in the same comment space while making sure you distinguish yourself as the one making each passage. With that said, here are my questions:

1.       Are you first off in a committed relationship?

2.       Are you the autistic person in the relationship, or the partner? If you are the partner, are you yourself autistic, allistic (not autistic but having other intellectual/developmental disabilities), or neurotypical?

3.       Are you married?  Dating? In a civil union? Divorced? Separated? Engaged? Widowed? Seeing multiple partners?

4.       What is your age and the age of your partner?

5.       How long have you and your partner been together? If you have been together in different capacities (e.g. first dating then married) please state the amount of time you have been together in each capacity.

6.       How did you two meet?

7.       What is your employment status (if applicable)? What is that of your partner (again, if applicable)?

8.       What is your level of education (high school, college, some college, graduate school)? What is that of your partner?

9.       What do you love about your partner (looks, personality, money, etc.)?

10.   What does your partner love about you? Why is he/she with you?

11.   What have you two done together (e.g. travel, live together, raising children, etc.)?

12.   How do you two spend your time together (e.g. watching movies, eating out, hiking in the wilderness)?

13.   What conflicts exist in your relationship (e.g. financial, emotional, etc.)? How do you two deal with these (talking, couple’s counseling)? How has that worked out?

14.   How often do you two spend time alone together (once a week, every day, etc.)? How frequently do you two enjoy each other’s company?

15.   What are your future plans (move in together, start a family, get married)?

What Are You Working For? Forum on Autism/Asperger Syndrome and Work

For this discussion I hope to allow people with autism to share their experiences based on what I tell them, in the hopes that we can discover what challenges autistic people face in the workplace, and how they might be prevented or mitigated, and help share this with the public. These questions are not meant to belittle or berate you but to give us a sense of how autism affects people in the workforce. If you don’t answer, please at least consider these questions in your own life if you are autistic and see what changes you can make to it, or in the life of someone you know who is, but please do not answer these questions for them as your answers may not be what they would have in mind. Let us know at the start of your response if you do not want your name or personal information to be revealed to anyone not on this page without a need-to-know basis for sharing and I oblige not to do so. I ask all other people viewing or taking part in this discussion to do the same. For this discussion I want autistic people who are employed or are of an age to be searching for work and for everyone to be completely honest in their answers, though feel free not to volunteer information where you feel it to be necessary. Feel free not to use your name or use an alias name, but in any case, do not mention names of or identifying factors that are too closely tied to the people you mention in your comments, but rather identify people as say your boss, coworker, employee, or customer, and if the information shared about them or your work experience could lead to trouble with these various people, please do NOT share your name. As always please be kind to each person on in this discussion. Any insulting or abusive comments will be deleted. Here is what I hope to find out:

1.       First off, are you in fact employed? 

2.       Have you looked for work? How many job interviews have you been given, how many applications have you filled out, how many times have been asked for or given a resume?

3.       Have you been employed in the past, but are no longer employed or working for your former company? If so why?

4.       Where are you from (your hometown, state, country of origin)? Where do you currently reside? Where do you work (name of town)?

5.       Where (what company) do you work? What is your occupation? What job responsibilities do you have?

6.       What is your level of education and training? Degree? Alma matter? Past experience?

7.       What interests do you have and how passionate are you about them?

8.       How long have you been working for your company? What other work are you qualified for in terms of training and education? What factors prevented or motivated you from taking other jobs?

9.       What does your salary afford you (new car, apartment housing, etc.)? 

10.   Do you spend time with coworkers outside of work? How well do you know your coworkers and employers and how well do you think they know you?

11.   What is the most difficult or stressful part of your occupation?

12.   What do you enjoy most about your job?

13.   Do you commute to work? If so how long does it take you? What sort of work is available in your town of residence?

14.   Are you married? Divorced? Separated? Civil Union? How long have you been married/divorced/separated/etc.? Does your spouse or partner share your condition? Have children? What ages? Any children with autism? How does your salary allow you to meet the needs of these dynamics?

15.   How did you get your position and how did you come by it? Friend? Newspaper ad? Help Wanted sign?

16.   Do you have any other conditions besides autism (AD/HD, bipolar disorder, depression)?

17.   Do your bosses and/or coworkers know of your condition? How has this affected your ability to work with and get along with them and to do your job?

18.   What do you think could happen if you disclosed your condition to your employer as well as your managers, supervisors, and coworkers?

19.   What sort of supports have you had or are currently being given for your autism? How were they paid for or provided? What sort of supports have you had for any other conditions you may have?

20.   What are your ambitions for the next five years? How have they changed and for what reasons over time? What have been your ambitions for today in the past and what are they know? How do you hope or plan to achieve them?

21.   What other factors not related to autism do you feel has enabled you or made it hard for you to do your job?

22.   Are you happy with your job? Would you take it if other jobs were available to you?