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December 2010



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aspie twins


First Published Saturday, 24th May, 2008.

The issue of twins is one that is close to my heart. For those who either are a twin or have twins among family members and friends, for those who teach or work with them, or for those simply with an interest in this area, I hope the following articles, sites, blogs and information are both enlightening and useful.

The following is an excerpt from “Autism and the Development of Mind” by R. Peter Hobson…

“Susan Foltstein and Michael Rutter(1977) conducted a groundbreaking study of 21 twin pairs in which at least one co-twin had a diagnosis of autism. None of the ten dizygotic(non-identical) pairs had two autistic twins, but in four out of the eleven monozygotic(identical) pairs, both twins were autistic. Moreover, there was evidence for a significant degree of cognitive disability in the large majority of those who were monozygotic twins to autistic individuals, but in only one of ten who were dizygotic twins. Or again, the prevalence of autism in the siblings of autistic individuals is low(about 3% of sibs have the diagnosis), but this is over fifty times the prevalence observed in the neurotypical population – and once again, cognitive disabilities are more common even among siblings who do not have autism per se.”

two sets in one family

For further detail and analysis:


In the first systematic and detailed autism twin study, conducted by Dr. Susan Folstein and Dr. Michael Rutter, the rate of concordance was compared between identical twins and fraternal twins. Concordance in this instance refers to the likelihood that if one twin has a diagnosis of autism, the second twin will also have a diagnosis of autism. Because identical twins share 100% of their genes, whereas fraternal twins share on average 50% of their genes, a higher concordance rate among identical twins is evidence for genetic influence. Dr. Folstein and Dr. Rutter found that the concordance rate for autism was significantly higher among the identical twins they studied, and subsequent twin studies have confirmed this finding. In general, the concordance rate for fraternal twins is similar to the 5-8% recurrence rate observed among non-twin siblings. Concordance rates among identical twins are estimated to be approximately 60%, but have been reported to be as high as 95%. The fact that identical twins are not always concordant for autism indicates that there may be non-genetic factors that are important as well, but the high concordance rates are strong evidence for significant genetic influence. The results of family studies, which have shown increased rates of autism among siblings and first degree relatives, are also an indication of the role that inherited factors play in the development of autism.

twin brothers in the wheatfields


Evidence for an underlying genetic basis also comes from the many instances in which individuals with autism have been diagnosed with known genetic syndromes. It is estimated that 10-15% of individuals with autism have an underlying medical or genetic diagnosis. There is a known association between autism and fragile X syndrome, which is an X-linked genetic condition that more frequently affects males but may also affect females. Autism is also sometimes seen in association with tuberous sclerosis, a dominantly inherited condition that may lead to seizures, mental retardation, and unusual skin findings. There have been many case reports of individuals with autism who have chromosome abnormalities, most often involving chromosome 15. There have also been case reports of autism in association with neurofibromatosis type 1 (NF1), a dominantly inherited neurological condition, as well as case reports of autism in association with other genetic syndromes. Finally, researchers at Duke University recently reported that some individuals with autism have mutations in the MECP2 gene, which is the gene related to Rett syndrome. When evaluating the possible causes of autism in any individual child, a genetics evaluation should be considered and the above mentioned conditions ruled out. Both fragile X syndrome and MECP2 gene mutations can be tested for through DNA analysis, and the chromosome abnormalities frequently found in individuals with autism can be tested for through a high resolution karyotype and fluorescent in situ hybridization (FISH) for regions on chromosome 15. Tuberous sclerosis and NF1 are typically diagnosed through a physical exam, which includes a woods lamp exam of the skin.

The following outstanding articles speak volumes in regard the relationship between autistic twins and those who raise and care for them.

Courtesy of “Looking Up”, the monthly International Autism Newsletter

(Volume 4 Number 2 2006)

“The Taiwanese man who adopted autistic twins”

TAIPEI, Taiwan: Chen Kui-chung, a resident of Taichung City, has four children. His second daughter is confined to bed due to being paralysed.

Chen also adopted two other children – Chen-an and Chen Chun-chuan – who are autistic. The two children are male twins. Over the past 17 years, Chen has cared for these children as if they were his own. He cares so much for the disabled children that even the children who are of his own blood are a bit jealous.

One day recently, the twin boys told their father:

“Thanks, Dad, for all the hard work you’ve done for us. Dad, take a seat and rest a bit.” Chen said that he was so overjoyed when he heard this. “This feeling is something that money cannot buy,” he said.

Chen is 52 years old. He works at the Chung Shan Institute of Science and Technology. He said that it was purely a coincidence that he began to raise the pair of autistic brothers.

He said that 17 years ago, a former colleague asked him whether he would be interested in raising a pair of twins who were in urgent need of adoption. It occurred to Chen that one of his distant relatives did not have any children. After he put together the adoption papers and the issue was taken care of, his relative suddenly passed away.

“It was actually the hospital that notified me that the twin brothers were still in the hospital. The natural parents of the two boys could not be found. I myself had no idea even which of the boys was the first-born. In any event, I began taking care of the adoption process and took the two boys home, figuring that I would decide how to handle things later.”

At that time, his youngest son at home was seven years old. Meanwhile, his daughter, whose brain had been deprived of oxygen during surgery when she was just three years old, was totally paralysed and was unable to speak. The only way he could communicate with her was by guessing the expression on her face. During the day, he hired someone to take care of her. When he returned home from work at night, he took over.

Initially, Chen hoped that he could find someone to adopt the twin boys. However, anyone he could find was only interested in adopting one of them. “It just did not seem right to separate the brothers. I figured that it was fate that had brought me to them and I decided to take both of them in,” he said.

When the twins were young, they were always imitating the way that others spoke. They were also extremely active, always crawling around here and there. Nonetheless, they were never able to learn how to go to the bathroom properly. Chen Kui-chung originally thought that they would show improvement after they began at elementary school.

It was only afterwards that he discovered that the twins were autistic. They copied the speech of others, just like parrots. However, what they said was absolutely meaningless. Chen ultimately arranged for them to begin attending a special school for autistic children.

Chen said that many of his relatives already thought he was burdened enough with his paralysed daughter, in addition to having to deal with two hyperactive sons. Relatives expressed serious concerns that Chen would not be able to handle the task of taking care of the three. They urged him to send the twin brothers away to a home where they could live. Chen, however, would not even entertain the idea and was determined to raise the boys himself.

Today, Chen Chun-an and Chen Chun-chuan are third-year high school students. Their mental capacity, however, is equivalent to that of a child of only four years old.

Even though the two are twins, they have entirely different personalities. Chen Chun-an is very quiet, while Chen Chun-Chuan is full of energy and always quite active. The two of them are able to make out very simple Chinese characters.

Lin Mei-yin, a teacher at Taichung Special School, said that the two boys were able to eat on their own,take showers on their own and go to the bathroom by themselves. In addition, they are able to perform simple household chores. At school, the two also help to push the wheelchairs of students who have cerebral palsy. They push the wheelchairs on and off buses and take the students around to their classes. Sometimes, they make the wrong move, and someone needs to stand beside them to monitor them.

Lin said that Chen Kui-chung had visited the school many times to take part in parents’ day activities. He has seen for himself that the children sometimes become angry and have problems adapting to the environment.

The only way to face the situation, however, is with patience. Lin said that Chen was very giving of himself and asked nothing in return, which was quite admirable.

Chen said that he worried about what the future held for the twins. He wonders who will take care of the boys when he gets older. Chen Chun-an and Chen Chun-Chuan are not able to understand the concerns that rest in their father’s heart.

Each day, they say to their father: “Dad, have a good day at work. We are going to school. Give us a kiss.”

Just those few sentences are enough to make Chen feel that his efforts have been worthwhile.

Chen said that he had decided to face the hand dealt to him in life. He said that people had asked him in the past about what use there was in raising two children who did not appear to understand anything. Chen replied: “Raising two sons who care for you is worth everything.”

Hold my hand


By Shelley Segal

A story about the love between siblings, and especially between twins.

“The Lord taketh away, and the Lord giveth” has been my mantra for some time now. When I lost the “normal” aspect of my son, Josh, to autism several years ago I was fairly certain my family’s life was over. It had taken years of fertility drugs and prayers, ardent begging and painful surgical procedures to finally get pregnant. And, I had scored with twins. Oh, the triumph of an instant family! But when the twins became toddlers the effort and euphoria of motherhood was dashed in a single diagnosis. I remember sobbing alone in a darkened room after slowly digesting the impact this would have on our future. I mourned the loss not only of my beautiful son, but of his typical sister, Jordan. In my grief-stricken, convulsive state I was dead-sure our lives were finished. How could I possibly find any joy in life or be the exuberant mother I wanted to be for my daughter while suffering this agonizing loss of her brother? I was so sure of this death knoll, so petrified at the idea both kids would grow up as miserable and morose as I was at that moment that the fear rendered me paralyzed for months.

And then a funny thing happened. We survived. Life went on and not all of it was dark and dismal as I had predicted. Our family is still intact. My husband and I are still married, the new city we’re living in is fine, the kids are growing up – they’re eight-years-old now – but more importantly, they’re flourishing. Now, I must stress (“stress” being the operative word) it hasn’t been easy. I’d be lying if I painted a care bear picture of our bumpy lifestyle. Josh is still severe. (On a good day I prefer the word, “idiosyncratic.”) He’s still working to conquer his multitude of deficits in order to read and write. He’s still non-verbal, hyperactive and sensory impaired, but we’re patiently hacking away at it. And on a good day, when the cup is half full, I marvel at how far he’s come. I don’t measure his success by an academic metric yet; instead, I gratefully blush at the compliments from the pool staff and grocery store clerks about the progress he’s made this year. And I brag that he was invited to two birthday parties in one week.

And what about his sister, Jordan? I never would have guessed in my traumatized state five years ago that my daughter would grow up to be such an exceptional little girl. But the Lord does giveth. I might not be raising the “typical” son I fantasized about, but Josh’s “special” nature and spirit supersede his condition. And his condition has undoubtedly shaped his sister’s mature spirit and character. How often have we heard this? How often have we heard about the caring, loving siblings of a special needs child who advocates for, defends, aids, and adores their brother or sister unconditionally? How blessed we are as parents to raise kids like these. Not that Jordan doesn’t have her moments. She mutters about constantly travelling to another room to watch television because she can’t stomach Josh’s taste in programming. (Stimming over Sci-Fi is much better than stimming over Barney, though.) But I haven’t really heard a substantial complaint out of her since she was five. Not even about the uneven attention she receives. She’s resilient, and doesn’t ask for my protection or wisdom unless she feels desperate.

As a parent I lament Josh’s condition far more than she does. The systemic nature of autism brutalized our family in the early days. I regret Jordan was exposed to more ugliness than I could ever have imagined. She remains steadfastly loyal to Josh even when he hurts her, and she manages adversity like so many of these siblings – like a grown-up. I’ll never forget how she handled the sight of her brother after his brain surgery. The kids were five at the time and we had to be separated from Jordan for a month. When we reunited at the airport Josh was in a wheelchair. He wouldn’t keep his cloth cap on and his swollen head looked like a bloody baseball. He’d also lost weight. When Jordan first saw him she was shocked, then pained, then incredibly empathic. She wasn’t scared of him, just heartbroken. “Joshie, let me hold your hand,” she said as she was crying. “Let me make you feel better.” Sometimes it seems that this has been Jordan’s job for years: Making us all feel better.

After Josh’s surgery I never separated the two again. I learned that my daughter wasn’t frightened of anything medical or anything that was Josh. I remember her shrieks from a locked room when we had to drain spinal fluid from his head, post op. I had to put restraints on him and pin him to the floor whole my physician husband inserted a large needle to extract the fluid. Josh’s nightmarish screams were expected and familiar, but still sickening. How stupid of me in hindsight to “protect” Jordan from the situation. She was desperate to handle it. She kept wailing from the other room that she wanted to help us; she wanted to be with her brother.

Jordan’s never been put off by his screams, only the agony creating them. She has assisted me in blood draws, IVIG procedures, and the administration of meds. She signs with Josh, disciplines him, and creates computer programs aimed at his academic success. Presently, she’s only too eager to participate. I wonder on occasion if she’s becoming a mini-me. I heard her cooing to Josh one night as I stood outside his bedroom door ready to tuck him in. I had to smile as I heard the familiar words I’ve uttered a million bedtimes before. Jordan was stroking his head softly and saying, “Goodnight sweet boy. I love you more than you will ever know.”

I also wonder about the “twins connection.” I used to think a soul mate was someone you were lucky enough to marry or appreciate as an adult. But when I look at my kids’ relationship I see that spiritual connections can develop at even a young age. Jordan once told me when she was six that she’d known Josh longer than me because she shared my womb with him. Well, you can’t argue with that. Do they have some special, transcendent tie that only they share? Three years ago I would have said an emphatic no. But as Josh creeps further into out world and his relationship with Jordan ignites in new ways, (after years of treating her like a lamp-post) I’ve been observing a loving, yet eerily focused look between them that raises the hair on my arms. I’m not just talking about good eye contact. I’m talking about the way they see into each other even in frantic, frenetic moments.

Are they old souls? Jordan has been described this way by strangers and friends alike since she was three. I understand the expression better now. When she was six she accompanied me to Texas to visit my dying father. In an almost ethereal, unselfconscious manner she sang, played the piano, and danced for him, radiating joy. Unlike me, she was completely unintimidated by death. When he passed away and I was reeling with grief at the funeral I remember Jordan signing “I Love You” to the casket as it was being lowered to the ground. She told me she did that for Josh. Later, she comforted my mother and me by telling us my father was not in pain now, that he was happy to be an angel on her shoulder so he could look after her and Josh. And she said it with absolute certainty.

On occasion she knocks the breath out of me with her insight and wisdom. I remember the first time she ever saw a wishing well. It was after Josh’s diagnosis and the kids had just turned three. Jordan knew nothing about autism; she just knew her brother was different. I gave her two pennies. Her first wish was, “God, please teach Joshie how to talk again.” Before I could stop her she thrust her second penny in with, “God, please make Joshie want to play wth me.” “Jordan,” I said, “honey, you need to make a wish for yourself.” She replied, “But Mommy, I’ve got to make the wishes for my brother because he can’t do it for himself.” With every penny I gave her she threw in a wish for Josh. Now I realize there are millions of selfless, loving, ascetic children in the world who adore their siblings. But what struck me was the total lack of hesitation in Jordan’s gestures. Even today, she continues to put Josh first. Her love and devotion seem automatic. She seems to intuitively accept – and even embrace – that she’s her brother’s keeper.

It’s not a role I’ve thrust upon her. It’s been suggested to me it’s a role she was born with: Jordan was sent to us to help Josh. I’m ambivalent about this suggestion. On a bad day it makes her sound like part of a bonus plan. You know, God feels badly that my only child will have significant challenges so he throws Jordan in as a consolation prize. Jordan has her own magnificent life to lead, she cannot exist solely for her brother. And yet, I’m astounded at how proud she is to accept the responsibility. Even a year ago when I argued with her that Josh’s fate was far from sealed, that my fondest desire was that he become independent of all of us one day, she replied, “Mama, I want to be with Josh. Whoever I marry better be nice to him, because I want him to live with us.”

Is she just saying something cute, something born out of a childlike innocence? She’s still very much a kid. Maybe they’re both just kids and I’m rationalizing their burgeoning spirituality as a coping mechanism. After all, we have our dark days and the future’s unpredictable. But I simply cannot ignore extraordinary events. I cannot ignore the way the children have redefined happiness for me by teaching me about true love and spirituality.

Though autism stripped my son of many abilities, he was left with a keen sensitivity and soulfulness. He doesn’t talk, but he’s affectionate and communicative, like his sister. The kids’ “twins-speak” is very real, just non-verbal. How prophetic were four-year-old Jordan’s words to her brother when he was receiving a nasty blood draw from the foot, “Joshie, I know it hurts, I know it hurts, please don’t cry. Just hold my hand Joshie, just squeeze it when it’s bad. I love you, Josh, I will love you and take care of you forever.”

The purity of Josh and Jordan’s relationship helps me keep life in perspective. The Lord gave me something, indeed.

twin brothers

News Articles & Various Links

“Twins UK – Twins Tips – Advice and Info on parenting and coping with twins, triplets, quads or quints. From pregnancy to adulthood.

Raising Special Needs Twins and Multiples:

“Twins and ASD”:

“Heritability of Autism”:

“Twin Studies”:

“Twinning Risk”:

BLOG “Autism Twins”:

twin boys

“Twinsonline – Information, Advice, Moral Support & Forums for Adult Twins and Twin Parents”:

“Twin Research”:

“Mom’s diary on twins reveals clues to autism”:

“Asobid Twins Are Autistic”:

“TWINS Magazine – List of Resources/Websites:

twin girls

3 Responses to “Twins on the Spectrum”

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  2. juliette0309 Says:

    Thanks for the kind comment.

  3. Bao Desorcy Says:

    Always valuable… regardless how often times read this!

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