This is the second in a series of articles designed to explore some of the issues and concerns that arise around what is currently called Asperger’s syndrome, which will soon be incorporated into the broader spectrum of autism disorder when the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is published in 2013.

Emotional intelligence (EI) is generally understood to be a person’s ability to identify and assess his or her emotional state, as well as the emotional state of others. It is not related to the kind of intellectual capability or intelligence typically assessed by IQ tests. Rather, it corresponds to a person’s ability to relate to others, work in groups, read between the lines in conversation, and interpret behaviors and moods displayed by others. It also relates to an individual’s understanding and regulation of those qualities within. High emotional intelligence provides a sort of shorthand for smooth interpersonal relations and communication.

Emotional intelligence is related to theory of mind. (See my previous blog, titled Asperger’s Syndrome: Theory of Mind.) The better able you are to imagine the world from another person’s point of view, the more likely you are to score high on a measurement of emotional intelligence. Persons with high EI are able to anticipate what someone might do in reaction to certain circumstances or statements. They are able to empathize with unspoken sadness because they are able to interpret an event in ways another person is likely to interpret it, given what they know about that person. They are able to avoid certain topics of conversation because they can predict which subjects might be problematic for another person. They understand the concept of conversational finesse. High EI is at the very heart of diplomacy.

A person with Asperger’s syndrome experiences the world in a very different way. With a tendency to take conversations and events literally, the emotional subtext often is unseen. This can lead to behavior that appears inappropriate at best, heartless or cruel at worst.

Imagine, for example, not being able to understand why the death of a beloved pet is still a sensitive issue for your friend even several years after the pet has passed away. Imagine saying something such as, “But that cat has been dead for two years!” And then imagine the reaction of your friend, who in that moment is feeling sad about the loss, feeling it as strongly as if he or she had lost the pet yesterday. Your friend is not likely to react well. Your words might sound intentionally cold, uncaring, and thoughtless. But when your friend does not respond favorably, you are confused. What do you do now? You made a simple statement of fact, and now your friend is upset with you.

This is the experience of challenged emotional intelligence. This is commonly the experience of a person with Asperger’s. Anxiety soars as the person wonders what he or she did wrong, what he or she failed to understand, or what was missed.

With therapy, a person with Asperger’s can learn to decode some of what seems mysterious in the realm of emotional intelligence. It is possible to discern intellectually what may not come naturally emotionally. For example, to use the above scenario as a basis of conversation in a therapy session might help a person with Asperger’s see that there are different ways of responding to the death of a pet, and that the person’s own, seemingly logical way may not be the way others respond to something as essentially emotional as the loss of a pet.

Learning that there is such variability helps a person with Asperger’s navigate the complex emotional undertones of daily life. It also helps relieve the free-floating anxiety that can accompany conversations and events, both familiar and unfamiliar, because it broadens the range of expectations and softens the likelihood of inadvertent blunders.

Emotional intelligence is a challenge for individuals with Asperger’s, but it is also a fruitful topic for exploration in therapy because it is so central to most interactions with others, both in social and in intimate contexts.

This is the first in a series of articles designed to explore some of the issues and concerns that arise around what is currently called Asperger’s syndrome, which will soon be incorporated into the broader spectrum of autism disorder when the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is published in 2013.

As a therapist, I see clients with a variety of traits clustered at the high-functioning end of autism, now commonly referred to as Asperger’s syndrome, a term I will use until the DSM-5 makes it no longer accurate.

No two clients with Asperger’s syndrome exhibit the same cluster of traits, nor does any one client exhibit them all. However, there is one element that I recognize as pervasively diminished in all Asperger’s clients. This element is called “theory of mind.”

What is theory of mind? It is a person’s ability to imagine the interior life of another person. This includes understanding why someone else does something, how someone might feel in a certain circumstance, what might be important to that person: in short, it is the ability to put oneself in the mind of another person and see the world from that person’s point of view. Theory of mind means being able to create a theory about the way another person’s mind works.

Theory of mind provides the basis for empathy because if you can walk in someone else’s shoes, you also become capable, by extension, of feeling any pain or delight that person experiences. You understand motivation. You catch a glimpse of fears and dislikes. You get to know the other person from the inside out.

According to autism specialist Simon Baron-Cohen, individuals with Asperger’s syndrome typically have delayed access or no access to this phenomenon of human communication and share a problem that is called mind-blindness. Since interpersonal communication is approximately 65% nonverbal, you can quickly see that not being able to formulate a theory of mind leaves these individuals at a distinct disadvantage in relationship with others because the behavior of other people does not make sense to them.

For parents, this gap can create difficulties when they treat their son or daughter with Asperger’s with the same set of interpersonal expectations with which they treat their other children and assume intact theory of mind capabilities. This can lead to incorrect understanding of the child’s behavior as being intentionally hurtful, for example, when in fact it was based in lack of awareness.

A common test used with children suspected of being autistic is called the Sally and Anne Test:

Sally has a basket. Anne has a box. Sally has a marble. She puts the marble into her basket. Sally goes out for a walk. Anne takes the marble out of the basket and puts it into the box. Now Sally comes back. She wants to play with her marble. Where will Sally look for the marble?

Most children will answer that Sally will look in her basket, because that’s where she put it and that’s where she expects it to be when she returns from her walk. Baron-Cohen discovered that only 20% of children with autism were able to answer correctly. A full 80% answered that Sally would look in the box, because that is where the marble is.

This test is often used to demonstrate the theory of mind deficits in children with Asperger’s syndrome. They believe Sally will look in the box for her marble because they know that’s where it is. They are unable to put themselves into Sally’s mind in order to understand that from her perspective the marble should be right where she left it: in her basket. Can you imagine how unpredictable and irrational the world must appear to a child whose logic is denied in such a manner? This is the world of a child with Asperger’s syndrome.

I work with children to help them build bridges toward understanding the behavior of others, so that they can come to anticipate that their own logical view of the world may not apply in all circumstances. This is one of the primary goals of therapy with these children. It is an attempt to help them experience the world as a safer place than it appears when their logical perspective is consistently shattered by experiences that do not align with it.

Children with social, emotional, and behavioral difficulties (SEBD) often exhibit speech, language, and communication needs (SLCN) as well. Clinicians and educators who work with these children have the challenge of identifying which type of treatments will best serve the needs of these special children. SEBD has been shown to be linked to communication deficits, but this relationship has not been fully explored. Gender, social conditions, intelligence, and relationship styles are factors that contribute to both SLCN and SEBD. Most children with these problems are not identified until they enter school, making the correlation between them more convoluted. For instance, executive function deficits may not be discovered until children enter school and exhibit symptoms of attention deficit hyperactivity disorder (ADHD). Other children may live with negative psychological and physical conditions such as abuse or neglect that can cause the children to stifle their communication, resulting in communication problems later on.

The most common type of treatment for SEBD is cognitive behavioral therapy (CBT). In a recent analysis of existing research, James Law of the Institute of Health and Society at Newcastle University in the UK looked to see whether CBT was ever combined with communication therapy for children. He also studied the research on CBT outcomes in children with Asperger’s, autism, and anxiety to determine whether the therapy had any positive impact on communication skills. For his research, Law examined 19 separate studies that included data from 148 children with SEBD and SLCN.

Although Law did not isolate one particular CBT approach that would be most beneficial for these children, he did discover that variation in communication enhancement techniques had a positive impact. Specifically, more formal techniques appeared to help the children with autism spectrum issues the most, and naturalistic and educational approaches were identified as effective methods for children with mild communication and behavior problems. In conclusion, Law added, “The potential overlap between SLCN and SEBD needs to be widely recognized by practitioners, and the implications for practice of this overlap explored more fully.”

Reference:
Law, J., Plunkett, C. C., Stringer, H. (2012). Communication interventions and their impact on behaviour in the young child: A systematic review. Child Language Teaching and Therapy, 28.1, 7-23.

One of the most difficult parts of raising a child with autism is the fear of losing them. For my son, the combination of intelligence, impulsivity, and an inability to comprehend danger results in my family living in a constant state of hypervigilance and fear. When we go out, there is always the possibility he will try to run away. When we’re home, there is the fear that he will get out of the house. Our family has addressed this issue with an ability to think “outside the box” and one step ahead of our 14-year-old son, Ben.

1. Under lock and key
The most obvious way to keep a child safe at home are locked doors. We learned the hard way that deadbolt locks with a switch that can be turned by hand was only effective until he was 6 years old. One day he unlocked it and wandered out of the house while I was only one room away. Luckily, I caught him in time before he was halfway down the street. We switched to locks with keys and installed them on every door leading to the outside, my laundry room, my daughter’s bedroom, and our master bedroom. They are all master keyed so that our house key opens them all. In addition, we don’t keep our keys hanging next to the door. It’s inconvenient, but that’s the point.

2. Keeping watch: tag, you’re it
Another safety trick we use at home is something I learned from a life guard. While attending a beach outing for kids with special needs, they handed out lanyards with laminated cards that said “I’m Watching” on one side and had emergency first aid information on the other. This was to ensure that when there is a group of adults hanging out watching their kids play in the water, the parent wearing the lanyard is responsible for watching the child. This made me think about our own situation at home, where too often, my husband thought I was watching Ben while I assumed he was. This situation leads not only to missing kids but also to marital strife. So, we put the keys to the house on a lanyard, and the designated Ben-watcher wears it at all times. This way, when one of us needs to use the bathroom, we literally hand off the lanyard to the other person.

3. Tracking devices, helicopters and bloodhounds, oh my!
One of the most frustrating things about staying one step ahead is that we often don’t think about something until it presents itself as an obvious problem. Even after we changed the locks and donned our key lanyard, Ben’s safety was still not guaranteed. Last year, our greatest fear became a reality when Ben climbed our 6-foot privacy fence with the speed and dexterity of a tomcat. The person watching him was only a few yards away and watched him do it but could not reach him fast enough. He disappeared into the woods for 3 hours and was found with the aid of search helicopters and bloodhounds just before the sun set; he was cold, wet, and shivering.
After that incident, we obtained a tracking bracelet from our local county sheriff’s department that Ben wears on his ankle at all times. In the event that he ever goes missing, we can contact the police, who will find him using the radio signal from the device, rather than alerting the local news and calling the search cavalry. And from what they tell me, as long as the device is checked regularly and in working order, it doesn’t take 3 hours to find someone with this device.

4. Out and about
Parents of children with autism spectrum disorder know how difficult it can often be to take our children out into the world. A simple trip to the grocery store can become disastrous in no time flat. When our kids get overstimulated or can’t communicate, tantrums ensue and we often have to make a quick exit, while not making eye contact with fellow shoppers and store employees. Ben’s Houdini-like skills have also extended outside the home; school, stores, and Grandma’s house have all been settings for a “Ben Escape.” One thing we do now when going out is use a wheelchair with a seatbelt. Because of Ben’s sensory issues and difficulty transitioning, the wheelchair provides a secure, safe place for him to sit as well as the emotional stability of his seat remaining the same while his environment changes. Portable door alarms have been helpful on the rare occasion that we stay at a hotel. We’ve even been known to stack some of the hotel furniture in front of the door, from floor to ceiling, providing a barricade that would make a lot of noise if he tried to get past it. We’ve done the math, and we’re statistically more likely to lose our son than to have to evacuate in a hotel fire.

5. Vaseline
Yes, you read that right; Vaseline. Good old petroleum jelly became my best friend after Ben’s 3-hour tour of the woods. I needed a way to keep fence-hopping to a minimum, and apparently barbed wire is frowned upon by our home owners association. So, several jars and a very icky fence top later, the problem was solved. If having an autistic child in the drug-store line doesn’t solicit enough curious glances from fellow shoppers, nine extra-large jars of Vaseline is sure to.

For more information about wandering and a free box of safety materials, contact the National Autism Association at http://nationalautismassociation.org/big-red-safety-box/

Related articles:
The Difference 1 Makes: Reflections on the CDC Autism Rates
Autism on the Rise: Are We Prepared?

Autism is the general term for a spectrum of developmental disorders that begin in early childhood. People with this disorder may have difficulty socializing, understanding emotional cues, or functioning in daily life. People with autism are not, as was once thought, intellectually impaired. In fact, many children and adults with autistic disorder show remarkably high intelligence in a variety of areas. Despite years of research, scientists are still not able to explain what causes autism, much less develop preventative measures or cures. The best approaches we have for helping those with autism are therapy and behavioral counseling. The goal of such therapy is to keep behavioral symptoms under control and improve the overall quality of life.

Children with autism show different signs and symptoms. Some are completely withdrawn, seemingly trapped in their own consciousness. Others are very outgoing but oblivious to the social or emotional needs of those around them. Among all behavioral symptoms, aggression towards oneself and others is the most troubling. In two controlled trials, the antipsychotic medication Abilify (aripiprazole) was shown to significantly reduce aggressive outbursts and mood variability in children aged 6 to 17 years.

In most instances, Abilify represents a good choice for modifying aggressive behavior. Adverse side effects reported from the trials included sedation, fatigue, and vomiting. These side effects typically occurred in the first week or two of taking the medication and faded with time. About 10% of patients in the trials discontinued Abilify because of adverse effects, compared with 7% for placebo. In the long term, the most commonly observed side effect was weight gain, which also plateaued after several weeks. Physical activity and a well-managed diet may offset some of this weight gain. In a 52-week trial, the effectiveness of Abilify at reducing irritability appeared unchanged. This finding is encouraging, as the benefits of some psychotropic drugs have been shown to diminish after prolonged use.

Stabilizing the emotional states of children with autism is an important goal for therapists and parents. When the child is calm and responsive, talk therapy and other interactive activities can be more meaningful and effective. Aggressive outbursts and irritability lead to a poor quality of life for the child with autism. Although a cure may still be a long way off, Abilify has proven that it can help improve quality of life for autistic children who exhibit anger and aggression toward themselves and others.

References
Curran, M. P. (2011). Aripiprazole in the treatment of irritability associated with autistic disorder in pediatric patients. Pediatric Drugs, 13 (3), 197-204.

Teachers and parents of children with ADHD know all too well how easily these special children can get distracted. The majority of research has shown that children with ADHD focus better and stay on task more when they are in an environment free from stimulation. But there is some evidence that specific stimulation can have a positive effect on these children. “Other studies have shown that background music significantly improves performance on cognitive tasks for children with ADHD but does not impact or negatively impact the performance of non-ADHD controls,” said W.E. Pelham, Jr. of the Department of Psychology at the Center for Children and Families at Florida International University, and lead author of a study on distraction among ADHD boys. “Despite these research findings, classroom teachers and the committees that revise the DSM continue to report and conclude that children with ADHD are more easily distracted than children without ADHD, and that distractors have only negative effects.”

Pelham examined how music or videos affected the attention of boys with ADHD who were non-medicated versus boys who were on methylphenidate (MPH) in a classroom environment. In three separate studies, Pelham found that the boys responded well to only musical stimulus. “Video produced significant distraction, particularly for the boys with ADHD, and MPH improved the performance of boys with ADHD across distractor conditions,” said Pelham. “In the presence or absence of music, MPH improved performance relative to placebo.” However, Pelham noted that although the video distracted all of the children, and specifically the children with ADHD, music had a beneficial effect, improving productivity in the boys with ADHD. “Thus, rather than recommending that children with ADHD perform homework in complete silence, our results suggest that listening to music while studying will not hurt most and may help some children with ADHD.” He added, “Rather than isolating a child with ADHD in a stimulus-free environment, these findings suggest that providing the child with headphones on which he or she could listen to music while working may enhance the classroom productivity of some children with ADHD.”

Reference:
Pelham, Jr., William E., Daniel A. Waschbusch, Betsy Hoza, Elizabeth M. Gnagy, Andrew R. Greiner, Susan E. Sams, Gary Vallano, Antara Majumdar, and Randy L. Carter. “Music and Video as Distractors for Boys with ADHD in the Classroom: Comparison with Controls, Individual Differences, and Medication Effects.” Journal of Abnormal Child Psychology 39 (2011): 1085-098. Print.

Perhaps youʼve come across one of the many articles or videos with titles like, “In Love with the Eiffel Tower”, or a recent National Geographic Taboo program called “Forbidden Love?” The topic is Objectum Sexuality (OS), a rare sexual orientation which includes affectionate, romantic, and sometimes erotic attraction and relationships with objects. The beloved objects can range from transport to landmarks, from sporting equipment to fisheye buttons.

Such stories may make us shake our heads and mutter, “How can this be?” Are these people delusional, or worse – dangerous? How seriously should we take these stories, and the people who are featured in them?

In April 2009, my interest in autism and Aspergerʼs Syndrome (AS) sexuality led me to contact OS-Internationale, an organization of people who have relationships with objects. I had read on their website that a number of the organizationʼs members reported diagnoses of AS, or showed significant autism traits (while other members simply identified as animists). After some correspondence with Erika Eiffel, one of the most influential and well-known OS activists, I volunteered to do a sexological survey of the membership, so that they could have data to offer other interested professionals, as well as journalists.

I didnʼt know it at the time, but the accumulated information kindly provided by the 21 English-speaking members of OS-Internationale granted me a perspective unique among sexologists and mental health professionals. I suddenly became “the” expert in Objectum Sexuality – though obviously OS people are themselves the true experts on what it is like to live and love in this manner.

The most startling finding, from my perspective, is how natural object relationships feel to those who have this orientation. Most of the people I surveyed rejected the idea of human-to-human romance, and many have never had a desire to experience it. Only two people reported having a sexual human relationship in addition to object loves.

Other findings: A history of sexual trauma does not seem to cause OS – only a couple of respondents reported abuse. And aside from Aspergerʼs Syndrome and autism diagnoses, one case of Tourettes, and two cases of PTSD – object lovers are a fairly balanced bunch. Though some respondents mentioned feeling anxiety and depression due to social ostracism, all but one person said they were happy with their orientation toward object relationships.

And itʼs not because object relationships are simple, either. These relationships include jealousy, breakups, and the heartbreak of unrequited love (especially when the object is an inaccessible public landmark or large piece of public transportation) as well as blissful love. Some people who love objects are monogamous, and others are not.

And when two or more people love the same public object, this too requires a complex negotiation within the human community. You can read more about this research in “Love Among the Objectum Sexuals” in the Electronic Journal of Human Sexuality (vol. 13).

At first I saw autism as containing the most likely explanation for Objectum Sexuality – but this didnʼt account for the people who were adamant that they were not autistic! I knew there had to be some other explanation, or collection of explanations, to account for the feelings of “this is whatʼs natural for me!” held by so many OS people.

Then I happened across an article about object personification synesthesia and realized that if a person senses a pleasing personality in, say, a teapot – it is logical that a person may develop warm feelings for that object, and warm feelings may grow even warmer over time. Humans, being what they are, are capable of eroticizing nearly anything.

Interestingly, synesthesia is also known to be more prevalent among people with autism.

Voila! Object personification synesthesia emerged for me as an area of exploration! About a year later I followed up the first OS survey with a second, shorter one. Many respondents did report various synesthesia-like experiences, including sensing personalities in objects. I am convinced that this area merits more research. My modest (self-funded) efforts can only offer an intriguing glimpse into this mystery of love and brain function. A clever group of well-funded researchers could do so much more.

In the meantime, people who identify as OS have the same needs as the rest of us, and share much in common with other sexual and gender minorities. They need acceptance and understanding from informed helping professionals. They need help dealing with social discrimination, grieving, and all the usual developmental challenges we face in life. OS people ask for the same right to live and love as human-loving humans do, and for access to help as they need it.

OS people, and their lovers, may seem improbable to many of us. But it is my belief that they are not part of a circus side-show, far down the midway, but that they too are in the big tent of trying to make sense of it all. Their erotic and emotional preferences may be rare, but they are real.

As a sexologist, I see the need for professional training in understanding OS, and will begin to offer online classes on this topic next week. While you may never have an OS client yourself, I guarantee that making the effort to understand this group will pay off in expanding your concepts of love and  intimacy.

So, is it love? Or is it object personification synesthesia? My answer is: it’s most likely both.

Related Articles:

What Do Your Sexual Fantasies Mean?
An Introduction to Clinical Sexology
Writing Your Personal Manifesto

I have just finished having my yearly tradition of what I like to call, “a good cry.” It’s my son’s fourteenth birthday, and for the past ten years, I have set aside the morning hours of this day to participate in this cleansing ritual.

My son, Ben, isn’t deceased; he has autism. Not the “you-wouldn’t-know-it-if-I-didn’t-tell-you” kind. Ben has “full-blown-could-melt-down-any-moment-take-off-all-his-clothes-and-run-into-the-woods-requiring-search-helicopters-and-bloodhounds-to-find-him” kind. You get the picture.

As a therapist, I work closely with the Kubler-Ross stages of grief:

• denial
• bargaining
• sadness
• anger
• acceptance

With acceptance usually comes closure; that feeling of relief that the person isn’t suffering any longer, a feeling that you can now let go of the worry that accompanies the loss and go on with living your life.

Ben developed typically until age two, then lost skills until his autism diagnosis at age four. Sometimes I wonder if a traditional loss would’ve been easier. There would be closure. With autism, there is acceptance, but no closure. My grief is what experts call “cyclical.” With autism, as well as many other chronic illnesses and disabilities, the caregiver’s grief over an absence of perceived “normalcy” often recirculates through these five stages.

The combined training I have received as a mental health counselor and autism mom has taught me the following about handling grief in the “Land of Autism.” I’ve organized them according to the words from the wise women who have accompanied me on this journey.

“If you don’t deal with it, it will deal with you.”

This statement is about more than denial. In my counseling practice, I primarily treat parents raising children with autism. While every parent goes through the denial stage, whether it is for ten minutes or several years, “dealing” with our grief requires more than just accepting the diagnosis. We need counselors, friends, and professionals to help us with parenting skills, marital strife, and self-care. After the diagnosis, I took off like a racehorse out of the gate, doing all that could be done to help my child. Two years into it, my son was thriving in a wonderful program, but I was in a fetal position on the couch with severe depression and panic attacks. Take self-care seriously.

“What you can anticipate, you can plan for.”

Being aware of the five stages of grief is helpful because we can tell ourselves it will pass when we are experiencing it. We also need to be aware of “anniversary grief.” This is where an event can trigger a grief response that can correlate to a specific date or time of year. For some parents it’s their child’s diagnosis date. For me, it’s my child’s birthday. I now anticipate this event and make sure I set aside time to process my sadness.

“It is what it is.”

I don’t want to cry on what is supposed to be a happy occasion. The first few years I told myself I was being ridiculous and needed to get over it. This did not help the situation and I found myself suppressing sadness that would end up bubbling over into other areas of my life without warning. Acceptance is not only about our kids, it’s about accepting ourselves and our feelings. Set aside the time you need to grieve.

“Never, never, never give up.”

Autism itself can be a tremendous stressor on families, and it tends to be a leavening agent that brings all the problems that already existed in our relationships “to the top,” so to speak. I have personally had to save my marriage, face my demons, examine my beliefs, eliminate bad habits, make new friends, and change careers. Later today, I will process my mixed feelings about the birthday, in private, with my husband, and we will be closer because of it. And I will wake up tomorrow with a renewed resolve to never give up.

“Which is harder – mourning an actual loss or mourning the ‘ideal’ of something you never had?”

This question was recently posted to the wall of my professional services page on a popular social networking site. I thought this was an intriguing question and one you yourself may have pondered in one version or another.

Grief is a natural feeling we have in response to a loss. Many people immediately associate grief with the deaths of those we love, but there are many kinds of loss that can plunge us into the deep well of grief. Loss comes in seemingly endless varieties. Loss of a relationship, loss of your job, loss of your home or a treasured object. Loss of the feeling of safety after a trauma. Loss of functioning after an accident or a medical crisis. Loss of your sense of security or self-assurance. Loss of freedom or independence. Loss of property or material goods. We can feel grief in response to the loss of anything we love and cherish. Being bereaved is the state of having lost something precious to us. I feel grief, I am bereaved. Mourning is a verb. Mourning is the outward expression of the feeling of grief. Mourning, in a broad sense, includes whatever acts we engage in to help us express our grief. Crying, wailing, wearing particular items of clothing or jewelry, building altars or shrines, creating art that reflects our feelings, engaging in grief rituals, writing, whatever it is that we do with the purpose of expressing our grief. Alan Wolfelt, internationally noted author, educator and grief counselor, said, (and I completely agree with him), “Everybody grieves…but only people who mourn really heal and move on to live and fully love again.”

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So, can we mourn something we never had? At first, the answer may seem to be no. If we must  lose something in order to feel grief and the something was never a real thing that actually existed, it can’t really be lost, right?  As so many seemingly straightforward questions are, the question of whether we can mourn the loss of an  ideal is more complex than it first appears. I don’t know what the “ideal” was that the questioner lost, but I can imagine many kinds of “ideals” that can be lost. We often find ourselves in the position of having to face the realization that what we once thought was ours was never really ours to begin with. I believe there can absolutely be grief and mourning over those kinds of losses. Let’s imagine that her loss was what she once thought was her ideal relationship. If the person she had pinned all her dreams on turned out not to be the person they seemed to be, and the relationship seems now a sham, that kind of loss can be heartbreaking. Perhaps you have experienced such a loss. There may have been painful betrayals, realizations that the person you loved, and who you thought loved you, did not really share your values, or feel the same way you felt. You may have trusted and believed that you had found your soul mate, your ideal, and then when the relationship ended, the realization that it was never the beautiful dream you had believed in, came crashing down. So, was it real? I think the answer is yes. And so is the loss and the grief that comes with it. Therefore it can be mourned.

Another example of mourning the loss of an ideal is the very real grief caused by the loss of hopes and dreams of the future. Families whose children are diagnosed with disabilities such as Down Syndrome, or who receive a diagnosis on the Autism Spectrum, understand this kind of grief and mourning for the loss of an ideal all too well. When a beloved child is diagnosed with a disorder  that will absolutely impact his or her future, quality of life, learning, or functioning ability, parents can feel a multitude of losses. Most of us imagine what our “perfect” child will be like before he or she is born. We imagine the wonderful things she will accomplish, the goals he will achieve. Our hopes and dreams for our children’s lives do not include hardships or pain that they may have to endure. Many families’ hopes and dreams for their children can seem all but destroyed when a diagnosis of a life-altering condition is given. Many families eventually learn to move forward and discover that their children possess amazing gifts. Eventually, they can come to celebrate their children’s unique qualities and see them as treasured testaments to the beauty and diversity of the human condition. This doesn’t mean that they don’t grieve and mourn the loss of the ideal life they imagined, a typical existence for their family, or an uncomplicated, usual course of development for their child.

The questioner on my page also asked though, “which is harder?”–mourning an “actual” loss or the ideal? I think in looking at what loss is, and the huge spectrum therein, we can conclude that “actual”, doesn’t necessarily mean something tangible. The loss of  hopes, dreams, or an envisioned future, is definitely included in the arena of genuine losses. No, those are not concrete things that we can touch or see, but they are very real nonetheless. Grief comes in many packages. Whether one kind of loss, and the grief felt as a result, is harder to grieve or to mourn than another, is not a question that I can answer. There are many who feel that the death of a child is the “worst” kind of grief imaginable. In my personal experience, I can say that for me, in my life, based on my own experience of the death of my own child, I cannot imagine that any other loss I will experience will ever compare to that. The death of my son and my subsequent grief, I don’t think could ever be rivaled by any other loss in my life.  This is true for sure of losses past, and I think I can accurately predict that it will remain true for losses future. The only other loss I could ever conceive in my own life that could bring the same kind of pain is if  I ever have to endure the loss of my now living child. Hope is not a big enough word to describe my wish to never, ever have to live through that kind of pain again. However, that is only my experience.

Each person’s unique experiences of loss and grief cannot be held to another’s for comparison. Every one of us is different and responds in different ways to loss and to grief. I used to try to compare my own loss following the death of my son to that of a mother whose child had died of murder or violence, whose last moments were spent in fear or pain, and think, my loss is not as terrible as hers. I was trying to somehow make myself feel better, to help myself come to a place where I could stop feeling sorry for myself. But I came to realize that I was being terribly unfair to myself in thinking those kinds of things. I deserved to feel sorry, and to feel sorrow, for myself. Sometimes, I still feel sorry for myself. And that’s ok. My son will not be here with me, or any other member of our family, for the rest of our lives. I am sorry for all of us who don’t get to experience his physical presence, and all that would entail, for the rest of our lives. I know that things can almost always be worse, and I am grateful beyond words that my child died peacefully, surrounded by love, but to live in those kinds of comparison based thoughts is to diminish my experience as well as his. So, I  stopped trying to make comparisons and I feel better for it. The same would apply for someone who tries on a regular basis to compare his or her loss to those of others in order to prove somehow that his or her loss is worse than others. That sort of comparing of grief never really works.

How an individual reacts to loss is very individual. Generally, the more we identify with, and the closer our emotional lives are entwined with the person, object or state of being that is lost, the more intense our feelings of grief. How entwined are your emotions and your identity with your home and all of your possessions? With your spouse or partner and all that relationship represents in your life? What about with your career? Your place of worship? Your friends? Your pets? Your investments? Your family? Various places and things and distinctive aspects of all that makes you who you are and which you hold dear? What if by some tragic turn of events any of those things were gone tomorrow?

The most important thing in getting through grief and loss, coming through to the other side, is having hope and having support. Research has shown that grieving people, no matter how acute the loss, who are able to identify some aspect of hopefulness, are able to move through grief with a better outcome. What is a “better outcome”? I think that means with the ability to feel functional, to feel as though you can contribute to the world, that you can feel happiness again, that you can begin new endeavors, and even though you may be left with a scar, you can move forward and not only survive, but thrive, in your life after loss. You may be in a place where hope seems hard to reach. But sometimes just hoping that you can get out of the bed today may be enough. You may hope to get out of the grocery store without crying, or hope that tomorrow will be a little bit better than today, or hope that you can get through the next five minutes.  Honestly, having that little remnant of hope may get you through it.  Without hope, you’d likely find yourself breaking down in the cereal aisle.

Find someone you can talk to who will not tell you what you should or shouldn’t be doing. Non-judgmental support that will allow you to express and explore your feelings. Look for a support group in your area. Finding others who have experienced similar losses can be very encouraging and empowering. If you feel that you need some extra help, seek out a counselor or therapist experienced in working  with people dealing with grief and loss. Above all, do mourn your loss.  Find a way to express your feelings, do something, create something, engage in some activity that allows you express your grief, even if only for yourself. While you are hurting, remember to be gentle with and take care of yourself.