1. Create a concrete plan you share with you child and set expectations before going on the vacation – If we know exactly what’s going on and can see a schedule beforehand it feels much less overwhelming to tackle new places and new experiences.

2. Make sure you’re staying in a place with enough space – when I was a kid, if we stayed in a place with plenty of space, my parents had no issues. For example, every year my parents would take us to Pawleys Island, SC. Generally that trip was fine because my parents rented a big enough house and I had my own space, which is something a lot of us on the spectrum need. One year, we moved to a much nicer but much smaller house. I had to share a bedroom with my brother and the house was very compact so we felt packed in and I had a lot of difficulties. Even though the house was nicer, renting the bigger, albeit more shabby, beach house was much better for our family.

3. Plan your vacation during the destination’s off-season and go to a place that’s less crowded in general  Autistic people can get overwhelmed in large crowds or places that have a lot of people. And when you go to tourist destinations, that can be even more overwhelming if it’s during a busy season.

4. Plan a lot of physical activities  Things that involve bike riding, walking, swimming, or even outdoor activities like the zoo, are good for helping to get rid of that excess nervous energy that can build up .

5. Doing more shorter vacations like day or weekend trips can be easier than going on a single longer vacation If a week long vacation is too much, try doing a few 3, 2 or 1 day trips. If your child hates the trip, you can leave without worrying about the fact that you paid for a whole week.

6. Since activities can be overwhelming, limit them in time and scope and plan them so that they work for your child - 

As an example, for a trip to a museum, create a plan of things to see and do and share it with your child before going in. Whatever you do, don’t just walk around looking at things. People, especially kids, on the spectrum don’t like uncertainty.

Also, call ahead and ask what the least busy time is – sometimes google has a graph that shows how many people are at a specific attraction for each hour of the day.

Also, plan mini tours that involve activities related to what you’re doing (like a scavenger hunt). Often times, places like a museum will offer guides for children.  Don’t be pedantic, the experience of new places and experiences should be enough. You don’t need to teach them everything about everything you see and don’t try too hard to make sure they’re learning. Children will remember activities related to what they saw, not  what was written on a plaque you made them read.  Be more hands off and your child’s curiosity will do the rest.

Plan an escape if it’s a new overwhelming experience. One time we went to a haunted house. My sister who is also on the spectrum was insistent upon going in so my mom talked with the people running it and they came up with an egress plan for her to go to a guide to take her out if she got overwhelmed and needed to leave.

7. Always have a plan of where your next meal is coming from – either bring your food or plan to eat at a specific place you research that is fun and not overwhelming from a sensory perspective

Plan rest times – While it can seem like it’d be better to make use of all the time you have and do as much as possible, if you do less things and have built-in breaks, the things you do will be much more rewarding and memorable. You don’t need to see the whole city or even the whole museum. A lot of parents

8. Be aware of your child’s needs and prioritize those over your own- If your kid likes rocket ships, go to the air and space museum. Even if you think you’d enjoy an art gallery more, you won’t if your kid is having a melt down the whole time. You can still go to the art gallery if you make it fun, but sometimes the path of least resistance is best.

9 Prepare staff in advance - Tell them you have a kid on the spectrum and explain that a meltdown is possible. That way, if a meltdown does happen they will be more patient and accommodating and you won’t get as many people judging you.

10. If you have multiple kids on the spectrum, consider one parent taking them each separately on different vacations based on their needs and interests. Or if you’re doing activities on the same trip, maybe split off so each child can do something that will work for them.

The post Planning a family vacation with Autism – 10 tips for success appeared first on Wrong Planet.

While being interviewed on Access Hollywood, Braxton said: “My youngest son, everyone knows, suffers from, or I should say, suffered from autism.” When asked to explain, she added “I’m one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum.”

First of all, by implying that all parents need to do to “cure autism” is get an early diagnosis and enroll their child in the right programs, Braxton is essentially blaming parents whose children haven’t been “cured” of autism. It’s 2016 and I’d like to think that we’ve gotten past mother-blaming, which was unfortunately a common belief decades ago when the refrigerator mother hypothesis first gained traction.

Second, the idea that autism can be cured before adulthood is not only completely false, it is also damaging because it gives the public the dangerous impression that autism is only a childhood disorder. There is already a tendency for the media to focus on children with autism and forget about the millions of adults living with autism, which has created the misconception that autism is a childhood disorder. This fallacy has resulted in there being far less support for autistics once they reach adulthood, a tragic state of affairs because transitioning to adulthood is a time when autistics need a lot of support.

This is certainly not the first time that celebrities have been irresponsible when talking about autism. For many years, Jenny McCarthy has spread misinformation by repeatedly claiming that vaccines cause autism and convincing many parents to go along with her in refusing to have their children vaccinated. This not only hurt those with autism but caused dangerous outbreaks of diseases such as the measles. Later McCarthy made a similar bogus claim that her son had been cured of autism.

Celebrities have a responsibility to be informed when speaking about important issues because they have a lot of influence on what people think and can impact the lives of those of us with autism. We need to urge more celebrities to speak about autism in an accurate and productive manner and we need to call out those celebrities who spread false information.

The post Toni Braxton’s son was not cured of autism and it’s irresponsible for her to say so appeared first on Wrong Planet.

Getting the big picture of behavior and autism

My head felt like it was going to explode when my son was diagnosed with autism in the mid-1980s. The diagnosis explained why he was flapping and spinning, but the “A” word stuck in my throat. Some parents, mostly mothers, have told me they were relieved when they finally received an official diagnosis because they knew something was wrong. Regardless of where one fits on the spectrum of reactions, the mind goes fast forward to the future and can’t help wondering what will happen:

• Will these behaviors ever go away?
• How well will my child be able to communicate?
• Will she live independently?
• Can he have an intimate relationship?
• What will happen when we are gone?

Since autism is invisible and diagnosed through behavioral observations, it is natural to focus on behavior. It’s natural to imagine that if we can make the behavior go away or at least minimize it, then a child may recover. Some of the behaviors of our children on the autism spectrum can also be so disruptive that this becomes our entire family focus. This article will attempt to provide a perspective on these questions which trouble most parents.

Initially most autism treatment focuses on reducing problem behaviors. Our children need to learn adaptive behaviors to be accepted by others and to bond with their families.   The positive behavior supports approach helps parents and professionals address issues in a relatively new way. Instead of using traditional rewards and punishments, positive behavior supports assumes that all behavior is communication. Parents, teachers, and therapists collaborate to determine what the child is attempting to communicate and teach skills and alternative behaviors to meet the child’s needs.

What we know from recent research

Children with autism grow and mature as we all do; the symptoms may change but rarely disappear completely.  Recent research from Deborah Fein and colleagues (2013) shows that a small percentage of children diagnosed with autism does move off the spectrum.  According to the researchers, these children learned to communicate and socialize much like their typically developing peers, but they remained mildly affected by conditions, such as anxiety, depression, or impulsivity, which slightly affected their social functioning. The children who lost their diagnosis had milder symptoms in early childhood, learned to process faces through intensive intervention, and had fewer self-stimulatory or repetitive behaviors.

Seltzer and colleagues (2000) found a pattern of change from childhood to adolescence and adulthood. 82% improved in communication and social interaction, and 55% showed less repetitive behaviors. These researchers concluded that the symptoms of autism lesson in severity over time and that the best outcomes occur for those with higher IQ scores and better language skills. Overall this shows compelling evidence that the troubling behaviors parents struggle with are likely to change over time.  These research findings are cause for optimism if supported by adequate services in adolescence and adulthood.

Another team of researchers, Taylor and Seltzer (2010) found overall improvement in autism symptoms and internalized behaviors in young people over a 10 year period. Rates of improvement slowed after leaving school though improvements did seem to continue, just not as much or as quickly. By age 21, young people with autism who do not have an intellectual disability stop receiving services. After that point in time, these individuals improved at a slower rate than individuals with intellectual disability who still had services.  So given what we know today about how children with autism grow and develop, with adequate resources and support, it is realistic to expect progress and lessening behavioral challenges.

Surviving and Thriving

In the meantime, while we wait for the hoped for change, how do we live with the uncertainty of what the future holds for family and child? How do we handle the next tantrum or meltdown? What about the struggle for services? Here’s the approach that I have developed for myself and that I teach families through my writing, speaking, and counseling:

• When you feel the stress take a few slow breaths and notice your reactions: thoughts, feelings, sensations in the body.  Like the weather, your unpleasant feelings will pass.
• Check out your expectations and adjust if necessary.
• As your mind settles a bit, examine your choices to cope in the moment.
• Refocus from the behavior to big picture values such as helping your child grow.
• Spend some time each day joining your child on the floor or at the table or a screen having fun, following your child’s lead, and building connection.
• Your child with autism is still a child and needs more than therapy in her day.

Sometimes it may seem that no progress is being made; the child may take 2 steps forward, 1 step back. Over time our children do grow and change, just like everyone. It takes hard work by all involved—families, professionals, and children, teens, and adults living with autism.  Sometimes it helps to remember that we are all doing our best.

Facing the Future 

Parents cannot control the outcome for any child, but we can have a full and rewarding relationship with a child growing up with autism. There is solid scientific evidence that individuals with autism continue to develop in adulthood. This makes it reasonable to expect continued slow steady progress just as with typically developing adults. We never stop being parents—our job just slowly changes through the ages and stages.

**********

Robert Naseef, Ph.D., is the father of an adult child with autism.  He is the author of the new book Autism in the Family: Caring and Coping Together from Brookes Publishing, which covers living with autism from diagnosis through adulthood.  He is a practicing psychologist at Alternative Choices in Philadelphia. Visit him on the internet at www.alternativechoices.com

References

Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schultz, R. T., Stevens, M., Helt, M., Orinstein, A., Rosenthal, M., Troyb, E. and Tyson, K. (2013), Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54: 195–205. doi: 1

Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2000). Families of adolescents and adults with autism: Uncharted territory. In L. M. Glidden (Ed.), International Review of Research on Mental Retardation, Vol. 23. San Diego: Academic Press.0.1111/jcpp.12037.

Taylor, J.L., Seltzer, M.M. (2010). Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. Journal of Autism and Developmental Disorders. 41, (5):566-74.

The post Will these behaviors ever stop? Getting the big picture of behavior and autism appeared first on Wrong Planet.

In general, it is harder for men to talk about problems than women. Women seem able to talk about problems and find comfort without needing to fix them. Of course, women do want to fix problems. As for men, when we can’t fix something, we don’t want to talk about it—and this is a factor in male depression and a problem in relationships.

As Nelson Mandela wrote, “A boy may cry; a man conceals his pain.”   Boys are still taught at a young age to feel ashamed of their tender feelings, especially their gentleness, caring, vulnerability, and fear.  What is acceptable is showing their tough, action-oriented side along with physical strength.  All emotions save anger are to be hidden even from themselves. So what’s a man to do when his child is diagnosed?   How do you handle that choked up feeling?  Men tend to withdraw and cry on the inside.  On the outside we may be grumpy and irritable, but on the inside we are hurting. This is part of the secret life of men raising a child with autism.

I wanted to be a better version of my father when I held my son Tariq for the first time.  I looked at my son and saw myself, only better.  His diagnosis of classic autism shattered that reflected vision, like a broken mirror.  There were no words.

Asking a male how he feels usually evokes an automatic “I don’t know.” What helps men express themselves when experiencing a broken mirror with an autistic child, 80% of whom are boys?  Try “Guy talk” such as:

• What’s it like for you? (Curiosity works better than empathy)
• Tell me more.
• I need to know to be closer to you as your / wife/ friend/ brother, etc.
• Your child needs you.
• Let’s figure out a plan.

Men respond to making an action plan.  This is a positive part of the male code and not outmoded.  Our families need us to be present, and as fathers we are yearning for connection but lost about where to start with a child who is so different.

To find clues, I ask men about their warmest memories of their fathers.  Almost without exception they recount doing things with their dads such as taking a ride or a walk, building or fixing stuff, going on errands, cleaning up the yard, watching TV, or throwing a ball around.

The essence of every good memory tends to be doing things together.  This fits the male mode of being.  It’s not everything.  But it’s a good start and it works every day.  We still need to get up to speed listening better and expressing ourselves.  We’re a work in progress.

The post Revisiting Masculinity: The father’s journey with autism appeared first on Wrong Planet.

Wrong Planet columnist Robert Naseef, Ph.D. is a psychologist with 20 years of experience and is the parent of an individual on the autism spectrum.

“It seems like every time the phone rings I jump.” Not a week goes without a parent of a child with autism or another neurodevelopmental condition echoing these words in my office. Is it a phone call from a child’s school asking that the child be picked up early because of a meltdown? Could it be another injury on the playground or in the classroom? Or has my child had another seizure? Otherwise, is a teacher reporting that many assignments have not been completed? Is it another bullying incident? All possibilities to be sure, but maybe it’s not bad news after all, just a friend calling to say hi.

Let’s take a breath and look at the traumatic emotional impact of child’s special needs or disability upon the family. Trauma is the personal experience that involves threat to one’s physical integrity. Trauma can also be caused by witnessing such an event, or by learning about an event that has happened to a family member. Although traumatic stress related to developmental disabilities is only recently appearing in the professional literature, this concept can provide a lens for understanding what families go through. It is a normal and natural response to trauma. But, why does it feel like we are living on alert?

A “bad day” is often lurking in the shadows. For example, if a child has a tantrum in the supermarket that attracts attention, or bolts across the street without looking, a parent or sibling may experience terror-terror that may trigger palpitations, shortness of breath, dizziness, and even flashbacks to life-threatening incidents. A child with autism, for example, unaware of danger, may break windows or dart into a neighbor’s house to search for items they are obsessed with. Those children who are bullied live in fear, and their families live on edge anticipating the next incident.

All family members may experience nightmares and disturbed sleep, as well as a sense of despair. They may spend long periods of time on edge and behave irritably with each other as a result. But families are resilient and with support and effective intervention, some sense of order and predictability is restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Parents and siblings, as well as the child with autism or other special needs, often need help and support to regulate their emotions during these periods.

Families go on courageously to find meaning in their struggle and love for their child and for life itself. Although families cannot control what happens, we do have a lot to say about how we handle things. So if you jump the next time the phone rings, take a breath, recognize your fear of what may have happened, and remember that your thought may not be true. Let go of your thoughts and feelings of what happened before. Take another breath and meet the moment that is happening-and of course hope for good news from a friend or loved one.

I invite you to let others hear about what helps when you are on edge. Also let me know about issues you would like to be addressed in future columns.

Check out Dr. Naseef’s practice, Alternative Choices

The post Every time the phone rings . . . I jump – Parenting a child with autism appeared first on Wrong Planet.

WARNNG: Wrong Planet is a family friendly site. However, the following article by columnist Scotty Holman touches on a very sensitive subject that may not be suitable for children or other people who are uncomfortable reading about abuse. Reader discretion is advised.

*”All is caprice. They love without measure those whom they will soon hate without reason.” – Thomas Sydenham, seventeenth-century physician, describing patients he referred to as “hystericks.”*

My mother was truly beautiful. I don’t say that as a proud son eager to lavish her with published praise. She was beautiful – that is a fact. Breathtaking as she may have been, she was also irreparably damaged, the product of an age-old pattern; the lovely and pure are victimized by bitter parasites who suck away every obtainable drop of innocence, thirsty, perhaps, for their own long lost purity.

Read All the King’s Horses

The abuse continued in secret for nearly ten years. Her childhood innocence was stolen from her at a mere two years of age, the instant she first shuddered at his unwelcome touch. Her mind, however, split apart a little at a time, until her identity was finally and forever shattered. All the king’s horses and all the king’s men couldn’t do a damn thing about it.

My mother’s sexual abuse left her, somehow, less than human… not a real woman, whole and centered, but a complex puzzle with too many pieces to ever be assembled. Though internally deranged, she cultivated a flawless public image of self-empowered, yet domestically inclined womanhood. So flashy… so charming… so empty…

She was only a caricature drawn in lipstick on the bathroom mirror, smudging and fading a bit more every day. I needed someone to protect and reassure me… unfortunately, so did she.

My dearly deranged mother has Borderline Personality Disorder, a mysterious condition characterized by instability in interpersonal relationships, fragmented self-image, intense fear of rejection, ceaseless manipulation, seemingly arbitrary and often violent outbursts, etc…

According to the nationally best selling book, “I Hate You – Don’t Leave Me.” by Jerold J. Kreisman, MD, and Hal Straus, “The borderline shifts her personality like a rotating kaleidoscope, rearranging the fragmented glass of her being into different formations – each collage different, yet each, her. Like a chameleon, the borderline transforms herself into any shape that she imagines will please the viewer.”

The fragments of my mother’s identity took center stage one at a time, each utterly unique characters in a baffling one-woman show. Her fractured performances typically dazzled and charmed the members of her gullible audience. They were also deeply painful and disorienting for those in closer proximity to the stage. I had the only backstage pass. My childhood was marked by unwilling, captive voyeurism. I was the sole witness of my mother’s private madness and all-consuming sexual shame.

Publicly, she was a champagne-sweet butterfly of grace and social finesse. She fooled them all so well, night after night, show after show… Each time the curtain fell and the audience applauded their approval, I forced myself to swallow the tell-tale vomit threatening to spew from my mouth. My mother has never been onstage a day in her life… but Laurence Olivier himself could not have outperformed her when she interacted with the public world, donning one carefully crafted persona after another.

Like any child, oblivious to the vast diversity of life outside their immediate domestic environment, I believed all mothers were like mine. I was an adolescent before I began to comprehend the severity of my childhood abuse. By that time my mother had lost all memory of her frequent, unpredictable episodes of violent, degrading, and perversely inventive abuse.

She now tells me that I, “greatly exaggerate the mere handful of times she even punished me.” When she says this, I know that she is not lying… not intentionally. She has repressed and forgotten those shameful memories. This shouldn’t be surprising. She also lost all memory of her sexual abuse for a ten year period, beginning when the years of molestation finally ended (puberty and the development of a womanly figure saved her from the old man’s perverse interest). Shortly after my birth, her long dormant memories erupted to the surface. My childhood was marked by her freshly unearthed sexual shame and the blinding delirium of her hysterical identity crisis.

One study, “Biparental failure in the childhood experiences of borderline patients” (Zanarini MC, Frankenburg FR, Reich DB, et al) proposes that, “Patients with BPD have been found to be significantly more likely to report having been verbally, emotionally, physically or sexually abused by caregivers of either gender. There has also been a high incidence of incest and loss of caregivers in early childhood for people with borderline personality disorder.”

It would be decades before I was finally diagnosed with autism spectrum disorder. Autistic children are not especially adept at walking on eggshells, and my mother had a way of laying them thoroughly over every available walking space. One wrong word, or gesture, a compliment paid to the wrong person, a sudden bout of food poisoning and my ensuing neediness… would send her into a blind rage.

Prestigious psychologist, Marsha Linehan, a foremost expert on the subject has stated, “Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

Before anyone uses my story as supportive evidence for the long debunked “refrigerator mother” theory of autism causation, I must explicitly state that my childhood mistreatment is in no way related to my diagnosis. My mother’s abuse may have exacerbated my developmental delays, but could not possibly be responsible for my infantile verbosity, perseveration, mild savantism, hyperlexia, dyscalculia, synesthesia, or any other of my longstanding symptoms commonly associated with autism spectrum disorders. Ironically enough, I believe I acquired otherwise unattainable social skills as a direct result of my mother’s personality disorder.

People often ask me how I learned to intuitively understand and respond to the shifting emotions of others despite my autism. I’ve always avoided this question because the answer is both uncomfortable and alarming – I had to learn to read my mother’s labile moods or I would be beaten senseless. Understanding the emotions of others was not merely an elusive social advantage, but an essential survival skill.

One of my family’s favorite home videos is footage of me at four years-old, struggling to break free of my mother’s embrace as I watch my father drive away for another nine month absence from my life. My face is red and streaked with tears as I scream, “Daddy, don’t go!” My father has always believed this to be a home video testament of my love for him. I’ve never had the heart to tell him that it is merely evidence of the overwhelming terror I felt each time he left me alone with my mother.

Worse than the physical abuse, was the constant blaming, shaming and emotional invalidation I experienced. After hurling me down the stairs or forcing me to lick up my own vomit, my mother would draw me close to her and coo in my ear, “Oh, Scotty boy, quit whining. You don’t have it so bad. When I was your age my grandpa would take my favorite stuffed koala bear. I’d go looking for it, but would find him instead. Then do you know what he’d do to me?”

I do know. I knew at five years-old and I know now. Those detailed stories clawed their way deeply inside my memory, forever altering my development. “I never told you about that stuff,” my mother will insist. She may believe she is speaking the truth, but I know better. I have merely to mention her koala bear and she will be instantly frozen in sudden, dissociated shock, returning moments later in a slight daze, a rapid change of subject ready on her tongue.

I have no doubts that my mother’s illness is directly related to her traumatic upbringing. Perry et. al’s “Neurobiological Analysis of Early Trauma,” reinforces this speculation yet again, “…despite being distanced from threat and the original trauma, the stress-response apparatus of the child’s brain is activated again and again.”

This would suggest that BPD is more closely related to chronic Post Traumatic Stress Disorder than the classic personality disorders. But why the continued pattern of abuse from generation to generation?

Matthew Huston’s book, “Borderline: Walking the Line,” offers an eloquent explanation, “BPD doesn’t just affect the one who receives the diagnosis; it often leaves a wake of turmoil through entire families as the emotional and relational disturbances ripple outward.

When a role model treats you as an extension of herself—there to meet her needs—the trauma can be long lasting. It takes a very strong person to overcome the effects, let alone maintain a constructive relationship with the parent.”

Why, you may wonder, do I feel the need to share such intimate and distressing details with the world? Because nothing in my life, long riddled with extraordinary tragedy, has induced more profound psychic disturbance than my mother’s mental instability. I’m purging myself… my words here are vomit, the expulsion of a poison long sickening my stomach.

If I’ve let the cat out of the bag, I feel no shame for doing so. There is a sickness in secrecy. My mother experienced ten years of sexual abuse for the sake of keeping up appearances and maintaining the family’s integrity. I don’t claim to be polite – fuck polite. I will be shamelessly transparent. Enough has been swept under the rug while my family disintegrated.

According to the American Association for Marriage and Family Therapy, “Family members often feel mystified and exhausted by their relative’s illness. The intense mood swings and anger outbursts can be frightening and disruptive… It is not unusual for relatives and spouses of BPD individuals to feel depressed themselves, and to struggle with feelings of guilt, shame and helplessness.”

When my mother was at her best, she was the most delightful, doting, spontaneous, and fun-loving woman, with the inflated optimism of a child and the attentive nature of the maternal ideal. What’s more, she was cool! She taught me how to dress, interact with my peers, and climb the adolescent social ladder. Grateful as I am for this specialized instruction, I know now that her motives had little to do with my own happiness. Her bottomless insecurity demanded a picture perfect family. She forcefully assembled her husband and children as one would each article of clothing in the perfect outfit. If a blouse, skirt or child failed to please her, they were quickly discarded.

Will my family ever heal? Can BPD be cured? Interventions and therapy are difficult to come by as this condition is highly stigmatized and avoided by many medical professionals. Treatment is made nearly impossible by the profound self-deception at the core of the patient’s disorder.

Bitter as I often am, I still understand my mother’s utter inability to control or recognize her behavior. I cast no blame on her – she couldn’t help the way she treated me. She was a product of her conditioning. Aren’t we all?

It has taken me 25 years to realize that I am nobody’s king, possess neither horses nor men, and will never be able to put my mother back together again. I’d love to see her restored to the complete and stable woman I’ve never known and likely never will. But her mental and emotional renewal is outside my control. I can only hope that by courageously relating these darkest experiences of my troubled life, I may raise awareness of a stigmatized illness. Perhaps by scattering the seeds of my words, I will miraculously plant a germinating bit of inspiration in the mind of someone, somewhere, destined to outperform royalty, equestrian and human effort… someone who may one day manage to put a truly beautiful – and perhaps not so irreparably damaged – woman back together again.

The post Scotty Holman: All the King’s Horses: Shattered Memories of a Borderline Mother appeared first on Wrong Planet.

Joanne Houldsworth is the parent columnist for WrongPlanet.net. She covers autism through the perspective of a mother of a young son with Aspergers Syndrome. She writes a weekly blog, entitled Aspergers: A Mom’s Eye View, where this article was originally posted.

“Greg, the doctor has discovered that your brain does not work the same as most people’s…” That is how the discussion with my 8-year-old started…

There is much debate about the age at which your child is ready to learn of his diagnosis. After all, you want your child to have good self-esteem and a carefree childhood; why worry him already? Since every situation is unique, there is no ‘correct’ answer to this valid concern. But I believe that everyone manages better when they understand what they are dealing with – and that goes for children as well as adults…

If your child is old enough to be aware that “he is not like other kids”, then you are not protecting him from pain by keeping him in the dark about his disability. You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.

For years, my son Gregory was dragged back and forth to various types of doctors, undergoing numerous tests and evaluations, in an effort to identify why he was struggling so much socially, emotionally and physically. I tried to be vague and upbeat in response to his questions about why he had to go see another doctor, but I never specifically identified to him where the areas of concern lay. I didn’t want him to label himself, or to feel like he was somehow ‘wrong’ ….surely ignorance is bliss, right?

But as time passed, Gregory began to tell me that some kids didn’t like him or thought that he was ‘weird’. He would tell me that kids didn’t want to sit next to him at school because of his ‘noises’ [tics]. And one day, when he was 8 years old, he announced to me, with a sort of thoughtful self-revelation, “You know Mom, I’m not like other kids.” Pressed for more, he responded, “We just don’t think the same.” But my heart nearly broke when Gregory, beside himself with self-condemnation and frustration, sobbed uncontrollably, “Nobody understands me! I just can’t….can’t….can’t help it!”

In fact, the kids (and perhaps teachers and other adults) had already unofficially ‘labeled’ Greg in their minds, based on his strange behaviors….I don’t blame them for this – his behaviors were definitely odd. But more importantly, Greg had also already labeled himself as strange and different – an outcast – and he blamed himself for it.

So, when we finally confirmed the diagnosis of Asperger’s Syndrome with a pediatric neurologist, I decided to share the news. I first shared the diagnosis, along with some educational material, with our family and a few close friends. I didn’t know yet what AS might fully entail, but I wanted to help them better understand and accept Gregory. I also knew that Barry and I could definitely use the emotional support of our relatives and friends!

After thinking long and hard about it, I also shared the news with Gregory. Although he was still so young, based on the feelings of inadequacy and isolation that he had already expressed, I believed he would find the information comforting, rather than disturbing. I hoped he would be able to redefine himself from being ‘weird’ to being someone with AS. So, I took him aside and calmly discussed his diagnosis in terms that I hoped he would understand and find reassuring:

“Gregory, you know how we’ve been taking you to lots of different doctors lately? Well, Dr. SyTe has discovered that your brain does not work the same as most people’s.” Greg looked shocked, but since I was calmly smiling, he was open to hearing more. “That is good news and bad news,” I said. “The good news is that one part of your brain is really, really smart. The bad news is that the other part of your brain has some trouble, which is why you have difficulty managing your emotions and making friends sometimes.” Gregory nodded his head, acknowledging these troubles. “So,” I continued, “we need to work really hard to get the ‘smart’ part of your brain to ‘teach’ the other part of your brain the things it needs to learn.” Then I asked him if was willing to work hard to help his brain and he enthusiastically answered, “Yes!” with a great big smile! Phew!!! I then presented him with a cute little book for kids, entitled “Can I tell you about Asperger Syndrome?” so he could learn more about the disorder.

To be perfectly clear here, most people do NOT have this discussion with their young kids. I later learned that we are in a small minority of parents who inform their elementary-school-age child of his disability. But I am convinced that it was the right thing to do for us. Gregory handled the news very well, and I believe, was greatly relieved to find a logical explanation for what he was going through. It validated his feelings and provided him exclusive membership in a special group of people. And then, as I provided him with more information about the disorder and talked to him about some famous people who also have AS, he began to take it on, as almost a badge of honor. Greg began to understand his strengths and challenges, and why they existed, and was therefore willing to accept that he needed to work to change his behaviors. We no longer heard the distraught, “I can’t….can’t….can’t help it!”

Coupled with our family’s growing understanding and acceptance of his issues, Greg’s knowledge of his condition allowed him to take control over himself, and gave him some ownership of his progress. We would talk about his challenges (and strengths!) as a family, so that his siblings understood the issues and what we were trying to accomplish together. And when we worked on social skills, and other topics at home, ALL the kids got into the act, and I feel that each of us benefited. Greg is no longer stigmatized, but accepted, understood and valued, so that at least under his own roof, he has a safe place to be ‘just himself’.

Over the last two years, we have continued in this pattern of openness with Greg, his siblings, his peers and teachers, and as a happy result, his support circle of acceptance has expanded exponentially. That acceptance, along with numerous programs, has enabled Gregory to grow into himself. He is now relaxed and happy – most of the time! He is a beautiful, bright, talented, funny 10-year-old boy. And oh yeah, he also happens to have Aspergers Syndrome.

The post To Tell the Truth – Asperger Mom appeared first on Wrong Planet.

The following are some points that I believe will help parents to stay away from panic and despair, and to move toward acceptance which in turn will move them toward being more effective parents with happier children.

1.  Autism is not new. Any problem parents of autistic children have now others have dealt with them in the past. This means you can use what others have learned about autism to help you. You don’t have to reinvent the wheel.

 2. Autistic people contribute to their communities in many ways, no matter what constellation of obvious abilities and disabilities they demonstrate. Autistic people are valuable as they are. They don’t have value only if they can be transformed into less obviously autistic people.

3.  The very wiring of an autistic brain means that the autistic person is likely to have significant and unusual abilities. Those abilities won’t always be make us employable, but autistics usually have excellent memories for facts accompanied by a drive to collect them. These abilities shouldn’t be seen as disabilities or freakish “splinter skills” just because they are less common among non-autistic people.

 4. The term autism spectrum does NOT describe a line upon which a series of “functioning levels” are laid out stepwise, with “low functioning” on one end and “high functioning” on the other. Just because a person seems to belong to one category at one point in their life doesn’t mean that he or she will seem the same at another point in his or her life. The situation the person is in often dictates how “functional” the person is. Children, especially, can get moved from one autism spectrum diagnostic category to another during early childhood.

5. Listen to and respect autistic adults.  They may be your best resource for information about autism, even if their apparent “functioning level” doesn’t seem to match your child’s. Keep in mind, they are adults, whereas your child is a child.

6.  Professionals are a great resource, they can also be a big disappointment. Some professionals only know the doom and gloom version of autism. This can set you up to see only where your child “fails.” This is dangerous because it may cause you to overlook the places where your child is succeeding. On the other hand some professionals will try to sell you on expensive and exhausting cures for your child. They give the wrong kind of hope. They may convince you to attribute your child’s development to a drug or therapy that is not responsible for the development at all.

7.  Autistic children love their parents. You may have to learn to see how your child expresses affection and not take it personally if your child doesn’t show affection in the way that typical children do. Deaf children may never speak the words, “I love you,” and Deaf parents may never hear those words, but it doesn’t mean that Deaf children don’t love their parents.

8.  Don’t buy into the common “siege,” “attack,” or “war on autism” metaphors. Similarly don’t listen to the rhetoric that says, “your kid is an empty shell,” and “kidnapped, soulless husk”. Ignore the threats that if you don’t do this or that your child will “end up in an institution.”  Treat your child with gentleness and respect, but also remember that he or she needs to be challenged and exposed to new experiences.

 9.  Don’t let anyone make you feel like you aren’t the most important teacher in your child’s life.  Don’t let them make you feel like your child is so unusual that only someone with an advanced degree can help him learn, thus making you, the parent, superfluous.  

10.  The idea of “critical periods” or “brief windows of time” during which you can teach your child something, has been exaggerated and oversold.  No one is advocating that children be neglected, but pushing hard to teach or otherwise transform a child in a certain time period could be as damaging as outright neglect.   Autistic development is not the same as typical development.  Autistics learn things in their own way, sometimes on a very different schedule than non-autistics do.

11.  All children have what might look like lags development, likewise all children have what look like sudden leaps forward in development. This bumpy trajectory may be more pronounced in autistic children.  This fact makes parents of autistic children particularly vulnerable to attributing a regression or the acquiring of a new skill to something that changes in the child’s life. In other words, just because someone says, “I gave my child this pill and he started speaking the next day….” or “I changed my child’s diet and suddenly he was making better eye contact….” it doesn’t mean that it was the pill or the diet that initiated the change, it can easily be a coincidence.

13. If you find an M.D. who doesn’t help with your child’s health problems because he or she sees every physical symptom as “autism,” or conversely, if a doctor sees only a genetic or congenital disorder and health issues that your child may have, and can’t see the traits of autism or learning disabilities your child also has and how they impact your child’s health, you may need to educate that doctor about how your child is different, or you may need to find another doctor, one with more experience treating children like yours.

This was a guest article written by Autism Diva. She runs the Autism Diva Blog.

The post 13 Secrets Parents Need to Know About Autism but Haven’t Heard Yet appeared first on Wrong Planet.

Glennys Jones’ son, David, 23, was found dead on December 31 last year, following an overdose of prescription drugs. Last week, a coroner recorded an open verdict at an inquest into his death.

Now Miss Jones is calling for more awareness of his condition.

David was found at his home in Belvedere Road, Crystal Palace, where he had been moved seven months earlier by Bromley Council. He had previously been a Broomleigh Housing Association tenant in Crown Lane, Bromley, but had to be relocated after falling victim to homophobic abuse.

As Broomleigh was unable to rehouse him at the time, it was decided David would go into temporary council care.

A social services meeting in April last year concluded that David needed to remain in the area so he could continue receiving his network of support.

Despite this advice, Bromley Council rehoused David in Crystal Palace, forcing him to register with a new doctor.

Miss Jones says she stressed her son’s vulnerability but was told that, as David had accepted the offer, it would not be reconsidered.

The 56-year-old said: “I told them their actions were totally irresponsible and, by moving David out of his safety net area, they were putting his life at risk.”

Following the move, David’s drug prescriptions for conditions which included anxiety and stress increased dramatically and he began to rely heavily on out-of-hours surgery services.

Miss Jones, of Newbury Road, Bromley, said: “If Bromley Council had not ignored recommendations from myself and social services, my son would still be alive. Neither Bromley Council nor David’s new GP understood his disability. Although it was not visible, he was not able to comprehend and assess information in the way you or I can.

“I can no longer do anything to help David, but I can raise awareness of this disability so another parent does not have to suffer such a tragic loss.”

A council spokesman said: “The council expresses its sympathy. While it would not be appropriate to go into detail about this particular case, the council can confirm that assistance with rehousing was provided to Mr Jones at his request.”

Asperger’s syndrome was first identified in 1944 but it did not become a clinical diagnosis until the mid-90s. A developmental condition affecting the way the brain processes information, there is no cure for the syndrome, which affects more men than women. Symptoms of the disorder can include poor communication and social skills, and sometimes physical clumsiness. Sufferers can have difficulty reading body language and making eye contact. Establishing set patterns and routines is also common, which can lead to distress when these are changed.

Strong attention to detail and the ability to memorise facts and figures also characterises Asperger’s syndrome. Renaissance artist Michaelangelo, the Victorian botanist, Charles Darwin, and the scientist, Albert Einstein, are all thought by some researchers to have had the disorder.

(Source: News Shopper, August 23, 2006)

CRYSTAL PALACE, London, UK

The post ‘My Asperger’s son died because authorities did not understand his condition’ appeared first on Wrong Planet.

–Paula Soto MSW, LSW

Read on for GroovyDruid’s response!
I can see why you’d be concerned, since you’re NT, and the mindset of Asperger’s is to you completely foreign territory. What would an aspie think to do with such skills?

Here’s a place to start on this question: I got bullied occasionally when I was small. I got in a few fights. I then took martial arts for a couple of years.

I haven’t been in a fight since.

Any good martial arts instruction teaches the ability to handle force. That’s the goal. Whether the force is directed AT you or OUT from you, martial arts teaches you how to control, manipulate, generate, and nullify force.

Once you can handle force, you usually find out you don’t need to fight. Most people think of force as just the physical aspect, but really, force starts and ends in one’s thoughts. When you have experience and skill in the application of force, you can see it coming far away in an opponent. You can also see anger or frustration building in yourself as merely emotion that needn’t translate to physical action. Training in martial arts tends to promote self-confidence and responsibility in the area of force.

I recommend the boy try martial arts, and I would put the following reasoning before the boy’s father: self-confidence and ability to handle force are not dangerous; fear of force is. It’s the scared child who slaughters neighbors and schoolfellows with a shotgun, not the black belt. Thinking to make anyone less dangerous by taking away his ability to manage force is backwards logic. It’s the other way around: a person becomes irrational when finally confronted with things he feels he cannot face, and refusing the boy training denies him the chance to confront force in a constructive environment. If done properly, martial arts should instill a feeling that the boy can face any situation with his wits intact, and that’s a good, solid recipe for a sane and peaceful human being.

You can assuage your concern by monitoring the boy’s progress. Some martial arts centers are lax teaching self-control; and sometimes the training fails to stick with a child, either because of immaturity or premeditated aims to use whatever new skills he learns to hurt those that hurt him. However, the signs of poor training or immaturity show up immediately. The child will go around karate-chopping doors and slapping up dogs, for example. He won’t become Bruce Lee overnight, so you and the father can observe him and see how he responds to his new training. If he shows signs of increased self-confidence coupled with restraint, then you’re all set. If he karate-chops doors, well then …

Send your questions to “Dear Aspie”! Just PM your question to GroovyDruid or send an e-mail to dearaspie@wrongplanet.net. Questions of a personal nature may be submitted anonymously, though printing a user name is preferred. “Dear Aspie” reserves the privilege of editing for spelling, brevity, and clarity. Thanks for your submissions!

The post Dear Aspie: Should Aspies Take Martial Arts? appeared first on Wrong Planet.