Hope and Jacob on Autism, Dating and Intimacy

Hope and Jacob on Autism, Dating and Intimacy

Pamela Block, Russell Shuttleworth, Hope Block, Jacob Pratt and Linda Rammler

This was presented at the 2011 Disability Studies Symposium, Instituto de Medicina Social, UERJ, Rio de Janeiro, May 24, 2011 and subsequently published as part of a book chapter: Block, P., Shuttleworth, R. Pratt, J., Block, H., Rammler, L. (2012) Disability, Sexuality and Intimacy. IN Politics of Occupation-Centered Practice: Reflections on Occupational Engagement Across Cultures. (Eds. Pollard, N., Sakellariou, D.). Oxford, England: Elsevier Churchill Livingstone

Hope and Jacob

Hope Block and Jacob Pratt are both autistic adults who met while presenting at regional and national disability conferences. Both communicate through a form of alternative and augmentative communication that is referred to in the literature as facilitated communication (FC) or supported typing. This technique involves the need for some level of physical contact between the person typing and another supporting individual to assist with motor planning and initiation difficulties. The technologies involved for this communication style can be as simple as a letter board (which Jacob often uses) and as complex as a text to speech device (which is Hope’s preferred method).

When Hope types, her wrist, arm or elbow is in physical contact with the person helping her. It is not her preferred means to communicate when easier strategies will suffice, such as body language, vocalizations and personal signs. You can learn more about Hope and her communication strategy by visiting: http://www.aina-ri.org/movies/HopeB.htm, (Block, 2011). Despite a nerve-wracking fear of a new audience's disbelief, it is in public performance spaces, such as during conference presentations, where she is best able to communicate by typing. She states: I don’t see things like ordinary people and it feels like I’m out of sync with the rest of the world. I am thought of as not very smart but I am very intelligent. I am awesome at presenting at conferences, but have trouble with conversations. I don’t know why that is. It is odd that I have so much trouble talking to people one to one. Please realize that it is me typing not my mom. I cannot type yet without support. I am perfectly capable of my own thoughts.

Unlike Hope, Jacob has a lot of oral language that is primarily nonfunctional. No often means yes and vice versa. When anxious, verbal diarrhea in the form of repetitive but “stupid” (Jacob’s own term) questions abound, like 'tomorrow is Sunday?' when he knows perfectly well it is not. Jacob is also echolalic, repeating the last thing he has heard or something he was forced to repeat years ago in a speech therapy program emphasizing oral language. None of this reflects anything at all about the myriad of thoughts swirling around his brain - thoughts both emotionally complex and vocabulary rich. To know this aspect of Jacob requires that he have access to the alphabet in either low or high tech QWERTY (standard keyboard layout) form with facilitation.

This facilitation involves skilled support for Jacob to be comfortable, because for so long he was viewed as someone who was incompetent intellectually. Feedback also needs to be given to him about continuing to look at the board and to keep going if he gets stuck mid-word or mid-sentence. Although Jacob prefers to have his hand tightly grasped to provide proprioceptive input, he is capable of isolating his own index finger, crossing midline, hitting a letter target accurately, and performing many of the other skills required for supported typing with a hand tourniquetting his shirt above the elbow. He corrects misspellings with his non-typing hand, too.

Jacob states: Without FC I would be a lost soul. I yearn to be able to type with anyone so everyone can know the depth of my thinking, my spirituality, my feelings, my understanding, and so many other sides of my complex self that one can't possibly know without typing with me. Typing does not change the fact that I am and will always be autistic, and that because of the severity of my autism, I will always flunk the standardized tests that lead me to be eligible for services provided only to those with an intellectual disability. Nonetheless, my inability to pass those tests has to do with performance barriers – the same ones that make fluent and meaningful oral language impossible.

Eventually Hope and Jacob discovered they had feelings for each other. They began dating in late 2009 and became engaged in May 2010. Their first date consisted of sitting without support at a table in an exhibit hall at a conference and just ‘being.’ On their next date, in early January of 2010, Hope’s staff enthusiastically began suggesting things they could do in the area, since Hope lives in one state and Jacob in a neighboring one. Hope typed: “Why do you neurotypical people always have to do something? Why can’t you just be?” 

This may be a good time to note that in the occupation of sexuality and relationships, intimacy may look very different to people who have various forms of differences in their learning or bodies that lead them to diagnoses of disabilities. As another example, Bob Williams (poet, disability rights advocate, and former Deputy Assistant Secretary for Disability, Aging and Long Term Care Policy and Commissioner of the federal Administration on Developmental Disabilities in the Office for Planning and Evaluation in the U.S. Department of Health and Human Services under the Clinton administration), wrote a poem about two people in love in an institution. They silently prayed each day that, when staff laid them on their sides on a mat, they would be positioned so they could face each other and let their eyes speak of their loves for one another. This IS intimacy although not, perhaps, in the way traditionally defined.

Because of communication and logistical challenges, dating for Jacob and Hope is complicated. They live several hours drive apart from each other in different states, so it is a distance relationship. Even with the support of family members and service-providing agencies, they do not get to see each other as often as they would like.

Hope

Love presides and stays alive, forever. It really speaks your heart. Without support I would never see my awesome but noisy, respectfully, handsomely, brilliant, kind and funny Jacob Pratt. Very necessary to be with my love…Somehow, somewhere, some way. Pretty wallflower finally has her dream. This is great…I am thankful for this chance. Need less reason and some awesomeness.

I love being engaged but I wish we could get married soon. It is so hard to be apart. I have another wish. Really want to just be understanding about Jacob’s need to get his [undergraduate] degree first. I am so impatient. First we need a place to live and figure out the funding. We need help with [my and Pam’s] father being so worried, and mom bringing me all the time to meet Jacob. It is hard for mom to drive long distances. It is weird to have your mother on dates. We can’t find people to type with both of us except Linda and she is so busy. I want so much to be a wife and be with my love always. Being engaged is fun but being together as man and wife would be so much better. Really hard to be so far apart. We love each other so much and wish it weren’t so hard to figure things out.

Jacob

I can’t believe I finally found love. I am experiencing all new feelings that others have spoken about but I could only imagine. Shakespeare, the bible, modern day poets, all have written about this wonderful thing called love. They understated the feelings. I can’t use words to describe the awesome and overwhelming feelings that overcome my mind and heart and soul but, believe me, this is the way I imagine HEAVEN WOULD BE LIKE. THE ONLY DIFFERENCE IS THAT LOVE IS GOD’S GRACE AND NOT THE SAME AS LOVING ANOTHER MORTAL IN WHOM THE HOLY SPIRIT LIVES. I am so blessed that love is in my life.

Supported dating is wonderful but it also sucks. The way it is wonderful is we have staff who are cool about our dating and our parents are too. Kind of like having approval for having a friend who your family accepts as one of its members. It allows us to see each other, because neither of us can drive or use the phone to arrange dates or even get ourselves to where we want to be. Supported dating in an ideal world wouldn’t be necessary, but when you have severe movement, anxiety, communication and sensory differences (Rammler 2007) resulting in a label of autism it is the only option for us to have the opportunity to be together.

Supported dating sucks because you are totally dependent on others to be together. Self-determination can only go so far before reality strikes. Reality includes staff thinking it is okay to cancel, or run late, or break up your plans to suit themselves. There is not a thing you can do except get frustrated, and take it out on yourself through self-inflicted pain inducing bites or head bangs, because if you don’t do it to yourself you will be called aggressive and punished for being so deeply disappointed that your heart is breaking, but the outcome is worse because the punishment is another postponement.

Read Linda’s respectful rules (abbreviated as an appendix). It is important for anyone providing supported dating supports to realize it’s hard enough, and not make it worse by imposing their agenda on us. I wish everyone love and if you have severe autism I wish you the chance to fall and be in love. And I pray you will have the supports you need to get to where you want to be in your relationship with that special someone.

Final Thoughts

At the moment, intimacy for both Hope and Jacob involves facilitated communication to let each other know how much they love each other and why. They also discuss their futures, their current lives (e.g., college courses both took recently) and, like any other couple, may complain to each other (e.g., about the slowness of a wait unit in a restaurant). Neither has expressed any interest in physical contact except for an occasional kiss on the cheek or hug. They often choose to sit near but not next to each other. Yet, as they communicate from their hearts, it is challenging for those supporting them to “be a fly on the wall” and to rise above feeling like a voyeur so as not to convey personal discomfort to Hope and Jacob that may limit their freedom of expression. Without support from others, such communication on their parts would be impossible. Thus their situation highlights the realities of facilitated sexuality as discussed earlier. Though the facilitation that Hope and Jacob require is, at present, on the level of logistical planning, transportation and communication, rather than sexual activities, it is already a delicate negotiation that redefines traditional notions of intimacy.

            Greater levels of intimacy, particularly in the sexual arena, comprise bridges that both Hope and Jacob, their families, and other members of their support teams may have to cross eventually. It will be important for others involved in their lives to do so nonjudgmentally and in full support of what Jacob and Hope, as the involved couple, want. Resources such as Dave Hingsburger’s (1990) I Contact: Sexuality and People with Developmental Disabilities may prove to be required reading for all concerned.

            Another issue that has arisen is how soon Hope and Jacob actually may be married. If Jacob’s religious orientation allowed it, he may well be amenable to living with Hope as though they were married. This would render the politics of interstate funding, reduced Social Security benefits  to married couples, and other systemic logistics unnecessary. Unfortunately for Hope, Jacob believes to do so would dishonor her. Therefore, he intends, as one of his independent study projects while he earns his Baccalaureate degree, to take on the system. In contrast, Hope’s eagerness for the two of them to be together, and her personal lack of religious prohibitions, creates another level of negotiation for the couple. The take-home lesson here is that other issues beyond disability (e.g., personal values, life plans, preferences) can also intrude on sexuality and intimacy among disabled people as much as these issues impact individuals who are not disabled.

            On top of negotiating practical, logistical, financial, and religious barriers, Hope and Jacob must face prejudice, discrimination, pejorative attitudes and behavior in ignorant people in the community. Recently, as Jacob and Hope sat on a bench in a mall on a date – their facilitators dismissed and watching at a distance – they had the displeasure to hear a nearby man talking on his cell phone, passionately expounded that, “leaving two retards alone together should be illegal.” This sort of hurtful encounter may turn out the hardest of all barriers to dismiss or overcome.

            Occupational therapists are well qualified, and in most cases, well-disposed to help people to negotiate this challenging terrain. It is the responsibility of educators to ensure that students receive a balanced and thorough preparation that goes beyond the physiological aspects of sex to explore emotional and cultural issues that influence the occupations of sex, sexuality and intimacy. We strongly suggest that research and scholarship engaging with these topics include the perspectives and active participation of disabled people. Hope and Jacob’s experiences reveal how necessary it is to consider individual perspectives, backgrounds and desires with regard to these occupations. There are no simple answers, no cookie-cutter solutions; each situation must be approached with equal measures of respect, empathy, and creativity. On the level of policy and practice, especially in institutional settings or in helping individuals negotiate with their families, occupational therapists have the potential to play a valuable role as advocates and facilitators to help ensure occupational justice -- that the rights, needs, and desires of disabled people are represented and respected. In some cases, it might be necessary to fight entrenched and repressive attitudes and policies that are decades old, if not older.  Ignorance and prejudice, such as Hope and Jacob experienced at the mall, is perhaps the hardest to address and change of all the barriers discussed here. What cultural and policy changes must take place, and what roles should occupational therapists play, in order to work toward occupational justice in this realm, and a world where such experiences no longer happen? These are the questions we should be asking our students, our authority figures, and ourselves.

Appendix

Following is an abbreviated version of the “support staff training guidelines” used to instruct primarily Jacob’s staff on how to support his dating. Oftentimes, dates involve family members because the logistics of coordination given other assignments, scheduled work hours, and a myriad of other factors. Another individual with a disability who is able to travel independently may accompany Hope in the near future as the “lovebirds” take the Shoreline train to meet each other at a midway point. Fortunately, both Hope and Jacob love trains and this line is reasonably accessible to both of them.

Supported Dating

Individualized for Jacob and Hope

ALWAYS REVIEW THE ENTIRE CONTENTS UNTIL SUPPORTED DATING IS WELL-ESTABLISHED

Important numbers to have:

JACOB’s contact information

HOPE’s contact information

NOTE: Both Jacob and Hope have facebook pages. They can “live chat” or send each other messages that way, too.

Planning

• Suggest dates/times that are mutually convenient for Jacob, Hope, and whoever is available to support each of them.
• Make sure Hope and/or Jacob don’t have other commitments. (Ask them first, then check their calendars with them.)
• If either does have something else scheduled, let that person choose whether to maintain the commitment or see each other instead.
  • If they choose to see each other anyway, continue. This may require:
    • Notifying whatever entity was expecting either one of them to reschedule, let them know s/he won’t be there, etc. The responsibility for Jacob’s cancellations falls on Jacob’s support staff or others and the responsibility for Hope’s falls on her staff/others.
    • Making sure other members of each team know of the change.
  • If one chooses not to see other and do whatever was originally planned instead, pick another date with each of them. Start this process over. (NOTE: Try to negotiate with them if the event to be missed affects health, safety, or other important life functions. Even if it does, it is still their choice.)
• Ask them what they want to do on the date. Use facilitated communication. They may have already communicated with each other about what they’d like to do, have new ideas, or be responsive to suggestions you offer. Support their negotiations as they jointly decide what to do. (In reality, it is often Jacob who makes the recommendation and Hope who agrees! Dates are often planned via emails.)
• Review the specific steps for planning dates at specific times.
  It is NOT up to staff to make decisions based on what they want to do. We are all here to support Hope and Jacob lead their lives as they choose!
  Additional planning for late afternoon (after 3 p.m.), evening, weekend dates
  NOTE: It is really far to Hope’s place but late afternoon, evening and/or weekend dates should still be planned if that is what Jacob and Hope want.
• Allow enough time for Hope and Jacob with their respective support to get to the meeting place before setting a meeting time.
• Both Hope and Jacob need rides back home so, given the distance, it is usually best to plan on both sets of support staffs to stick around. In fact, double or triple dates work well!
• Confirm the date, time and place right before the actual date. Do this the night before or morning. (Note that Hope’s home support staff members do not work during the day all the time.)
  • Make sure all support staff who will be involved in supporting the date have each others’ phone number in case either Hope or Jacob are sick or there is another compelling reason to reschedule.
  • Compelling reasons to reschedule include serious weather, serious staff illness, lack of transportation at the last minute (e.g., breakdowns, accidents).
    Set dates are NEVER to be canceled/rescheduled for the convenience of staff.
    Support on dates
    Bring extra money just in case Jacob or Hope do not have enough. Get a receipt so you can be reimbursed. Make sure you have enough gas in your vehicle before the date. It will be okay to stop and get gas on your way back home with Jacob as long as you tell him you have to do this.
    Remember what Hope said as this is paraphrased: “You neurotypical people have a need to do whereas we autistic people are okay to be.”
    Remember, it is THEIR date, not yours!!!

• Bring Jacob’s letterboard and Lightwriter with the plug. Make sure Hope has her Dynavox. Both of them can type on a letterboard so bring a back up just in case.
• Bring something for each of them to use for proprioceptive input.
• Let Hope and Jacob change plans at the last second if they want. Use facilitated communication.
• Avoid traffic if at all possible while going on the date.
• Don’t rush.
• Allow them to choose their seats. Allow them to change their minds about where they’re sitting. Remember that what Jacob says may be unreliable so ALWAYS use facilitated communication to confirm.
• If you are there with your significant other, confirm with Hope and Jacob whether they want you to sit with them or if they’d rather sit by themselves.
• Be available to facilitate their communication, however.
• If you are at a restaurant or another place where Hope and Jacob need to communicate with other staff, ask if either of them want assistance ordering and how they would like that assistance to be provided. Follow their instructions. You work for them!
• Be ready to support any other issues that may arise (e.g., by explaining noises, movement differences, anxiety, sensory needs) to others nearby.
• Hope and Jacob have a right to be anywhere in public. They do not have a right to disrupt others’ peaceful access to those places and, if either one continues to do so, it may be appropriate to leave (at least for a sensory break).
• There is a fine line between honoring Jacob’s and Hope’s right to be present with their autism and them truly disrupting others’ rights. Here are some guidelines to help you decide:
  • If it is merely a case of someone else being judgmental, remember Hope’s and Jacob’s right to be there. It is okay to point this out gently.
  • If someone actually says something rude to them or you, tell them you’re sorry they were “bothered” and ignore them.
  • If someone has been interrupted or annoyed, apologize in addition to Jacob’s verbal apology (one of his aspects of perseverative speech is to say “I sorry” if he perceives someone to be upset with him) and explain briefly what autism is. Try to help the person understand that this is not intentional.
  • If someone has been hit or otherwise aggressed against, make sure they are okay. Be prepared to exchange information unless the person is certain that everything is okay.
  • If the environment is too noisy, at least take a sensory break. This is reason to leave if Hope and Jacob want to.
  • Treat other incidents (e.g., spilled glass of water, spilled popcorn, need to use the restroom, or other events) as you would for anyone else. Deal with it!
  • Leave if Jacob or Hope want to leave. Don’t drag it out “just because the date isn’t supposed to be over.”
• In a really difficult situation involving authority figures, feel free to call another member of Jacob’s or Hope’s team for advice.
• If Jacob and Hope want to extend their date, and it is possible to do so, go ahead. Just make sure everyone else knows so they are not “missing!”
• If it is not possible, negotiate with them about why not and what to do instead. Use facilitated communication.

HAVE FUN!!!!