Autism and Siblings

Many families with an autistic child have additional children, some older, some younger – there seems to be no pattern in birth order when it comes to ASD – and sometimes they have more than one child on the spectrum. This blog is about siblings to autistic children, that are not affected, so called neurotypical or NT children. Their life is often heavily impacted by living with an autistic sibling – emotionally (since the sickest or most demanding child often demands the focus of parental attention) and physically (since certain family activities are impossible or aggression is displayed).

A sibling of a child with Autism at SOME point and at SOME level suffers neglect – it is by no means intentional by the parent, but simply due to lack of energy, time, and resources. Even the most dedicated parent can’t split him/herself in two: If one child needs constant attention, the other one is expected to hold back with its demands. If one child needs physical restraint, the other goes untouched. If one child throws a big fit when the TV channel is changed, the rest of the family often watches their choices. If one child lines up cars and they can’t be touched, the other child learns to play with something else. If one child needs to listen to every song on the CD 3 times, everybody else does. If one child only eats carrots, then carrots are served even if the other child doesn’t really like them and if one child does not tolerate mashed potatoes, the other child might grow up without ever tasting them.

There are many studies and articles about how wonderful it is to have an autistic sibling. Praises are sung about how children become more sensitive and compassionate, when they live with another handicapped child, how it makes them grow, learn care-taking skills, improve social competence and how it teaches unconditional love. That is a very beautiful thought and certainly true to a degree, however reality for most siblings to children with Autism is more about anger, embarrassment and guilt, than love, social skills and harmony.

Survival skills are learned early, since siblings have to cope with issues from simple negligence to physical aggression. They learn to accept the fact that most of the parents’ energy and time goes towards the ASD sibling – they mature early, learn to do things on their own or retreat to their room. Children that have an autistic sibling experience a higher degree of loneliness – how must that feel, if you can never invite a friend over in return? How is daily life, if you can’t go out as a family, have to stop in the middle of a fun activity or live in a destruction zone because of your sibling? What does a child feel, if the autistic child’s tantrums get them what they want and your tantrums get you consequences?

Because autism is such a hard disorder to relate to, is might destroy social competence rather build it. An interesting pattern of differences was found between the siblings of adults with autism compared to the siblings of adults with Down syndrome (Krauss and Seltzer. An anticipated life: the impact of lifelong caring. In: Bersani, Responding to the challenge, 1999)  Siblings of adults with autism were less likely to be married (44% versus 80%) and less likely to feel  emotionally close to their brother or sister than siblings of adults with Down syndrome. From other parents I hear stories of resentment, how hard it is for children to understand melt downs that are not punished in the same way and sensory issues that are close to impossible to explain to someone not suffering from it. Often is seems that the ASD child is “getting away with things” and siblings get punished harder. Expectation levels tend to be different, which is difficult for children who have an innate sense of justice. One boy I know has suffered multiple bites from his autistic brother and finally fought back, which had him grounded. As as the sibling gets older and understands more of the family dynamics, they might well conclude that the autistic child is the root of all financial and marital problems (see other blogs).

The older the kids get, the bigger the (emotional) gap that opens up between them. While a toddler might still accept life with few choices and tolerate certain routines and behavior from an older sibling without questioning, at preschool age they start having their own opinions and demands. Every mother of a handicapped child dreads the day when the other siblings realize that “something is wrong” with their brother or sister. When their experiences in the world make them conclude that not everybody lives like their family and that it is them and the sibling that is NOT the norm. Worst of all days however is/will be that day that your NT child gets embarrassed by his sibling and avoids or even denies any relation in front of others.

So here is a quick glimpse about how we try to deal with the emotional pitfalls for our NT son:

For the longest time, I was worried sick what the daily walk on egg shells would do to my younger son, who grew up in a world where he not only had spent hours sitting in on his brothers therapies, but where he learned at an early age that is it better for all when his brother gets the first turn, the bigger portion and the winning ticket.

There is no music played in our house (just in the car) for sensory issues – will this affect him? At the age of 5, my oldest was not able to watch new movies, he was scared of any TV, while the younger one was just developing an interest (that was denied). Things have gotten much better over time, our life is less restricted, but even now, since his brother has so many food allergies, both kids get a packed lunch, though the little one would LOVE to eat the hot school lunch with his friends.

My NT son is starting to question why his older brother repeats sentences sometimes over and over. He also wonders why he doesn’t play with him creatively or joins in building, but rather sticks to his cars. For a while the younger one thought that he would also get a Teaching Assistant when he goes to the next school year, but he seems to have realized that he won’t – I wonder what he thinks the reason is!? Is it time for “the talk” that his brother is different? Because at some point you will have to explain to your children what Autism means. (Bågenholm and Gillberg stressed the importance of siblings having simple words of explanation to give to others about their brother or sister with autism.)

For the mean time, we try to treat our children equally in all aspect of life, Asperger’s or not – same expectations, same punishments. Both learn violin, both will go to boy scouts. Same pocket money, same birthday treats. When concern was voiced over echolalia, we did not stop raising one of them bilingually. When there is new food fussyness, they still have to try a fork of everything before rejecting it. This might sound easy enough, but it is not. Being equal to an NT and ASD child is hard work that often calls for creative solutions. Both get read to, even if one fidgets and the other one pays attention. For a while I gave both children vitamins, since No 1 had to swallow so many.

One of the advantages of having a younger sibling to an ASD child is that they learn more from each other, since they play on the same level for a while… but when the younger one overtakes the older one, things gets difficult. The younger can already build Lego better and draw more advanced pictures. They are about at the same reading level despite their 2 year age gap. We constantly try to boost our firstborn’s self esteem while still praising No 2’s progress. We are giving our son with Asperger’s private swim lessons, so that his brother won’t ‘outswim’ him. And the younger boy has/had to wait with some things (violin, boy scouts) to ensure a bit of a head start for his brother. He will eventually catch up, but we will try to cross that bridge, when we get to it…

We make a daily effort to bridge the gap that is opening between them and constantly try to mend the family back together.We take great care that we don’t paint ourselves and especially our younger son into a corner of routines and demands. After all, we are his parents with just as much responsibility for him as for our other son.

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Living with an Autistic Child = Heading for Divorce?

All challenging life events can serve as catalysts for change. Some partnerships crumble in the face of hardship while others get closer, some families disintegrate while others thrive. The same is true for a diagnosis of autism and what it can set in motion.

According to the U.S. Census Bureau, 47% of first marriages fail and 57% of all marriages end in divorce. And while the divorce rates among families of children with special needs are comparable, the general consensus among experts is that there appears to be more reported marital distress. In the UK – for whatever reason – there is more evidence that an above average percentage of parents of Autistic children end up as single parents. In a study by Bromley, one in three families were lone parents. The Autism Awareness Week report showed a lone parent rate of 17%, compared with a 10% national average for the UK.

From my personal experience, I can’t attest to a noticeably higher divorce rate, but I can certainly confirm a higher disconnect and frustration level in partnerships with ASD children. The simple fact that there is more daily issues to deal with, more worries and challenges combined with less sleep and more financial demands, can account for that already. But, personally I think, the main reason marital disconnect is trend that many mothers turn into Autism warriors, while their partners stand aside.

Many mothers throw themselves into therapies and treatments with the fury of a lioness. The husband, if not in denial from the beginning, often takes a more rational, cautious approach. And while the mother reads more and becomes entranced in the world of Autism research, the divide grows. A father often does not have the time or the initiative to read and hope and do all that, which to the mother seems a lifeline and the only way forward. And while he might be willing to listen and is happy that his wife enrolls the child in different therapies, there comes a time – sooner or later – where these treatments will cost money – a lot of money – when the therapies are not or barely covered by insurance or the ever growing pile of supplements cost a monthly fortune.

This is usually the turning point where the parental world views clash as incompatible and the rift that has slowly widened is revealed. While the mother argues for the treatment on the wings of the little evidence in her hand and the big hope in her heart, the partner often can not ignore the rational thought of wasting money and feel obliged to upkeep the financial responsibility he assumed. (Especially when the mother has given up her job to care for a child with autism, which made him the sole bread-winner).

So both start fighting with the conviction that they are doing what’s right – one for the child’s future, the other one for overall family’s future. And if they can’t come to terms, find a solution or a middle ground, it gets personal: one apparently doesn’t love the child enough and the other one wants to ruin the family for the sake of one. What starts as a fight over a financial issue, then often stirs up the whole swamp of stress, emotional imbalance and perceived neglect, around which you stepped carefully for quite a while – until just now.

One of the reasons that Autism is so poisonous for a relationship is the fact that the mother aligns herself with the weakest member of the family, as she instinctually does, and the rest feels neglected. An ASD diagnosis is only the beginning of a long journey: when researching, finding the cause and possible solutions to developmental problems, organizing therapies and subsequently fighting with insurance companies in addition to the everyday life, it seems obvious that something has to give. Most often, the mother’s personal development goes out the window first, reduced attention for the relationship follows. Powerful emotions like guilt, anger and social isolation due to Autism are often not resolved in order to simply survive the day. Communication problems arise due to lack of time and lack of energy disables family activities, let alone marital ones. The partner feels neglected, shortchanged and shut out. For a relationship that is fragile or unstable, it is the beginning of the end.

And yet, there are many marriages that survive the diagnosis and the years of treatments that follow, my own being one of them. It is, however, a lot of work – whether it is more or less than with a ‘normal’ marriage, I couldn’t say, I’ve only had this one.

Most importantly after a diagnosis and on the journey through therapies and school, you need to keep the lines of communication open. And you need – early on! – to come to an understanding about how far you can burden yourself financially. There were quite a number of treatments and therapies that I would have loved to try out, but at the time it wasn’t financially sensible. After waiting a while, some still seemed promising, so we tried them, others were a fad and I’m glad I didn’t waste our money. Another important rule for us was that we would only do a treatment, if there was enough scientific evidence for it or a test supported its need for our son. It was often frustrating to come all enthusiastic, armed with other parents’ raving testimonies to my husband, only to have the treatment picked apart by his scientific brain. My choice was then either to give up or get more scientific evidence and present my case again. It always resulted in a more informed choice that we BOTH supported.

Finally, one of the hardest things to overcome was the feeling that I had to defend my son against everybody, including my husband. When he voiced criticism or frustration with our child, MY child, I immediately would put my guard up and go into fighting position – the mother-son unit again the evil father. But that is not how it works, that only widens the gap. How else would he ever have the opportunity to express his feelings, if I always took them as attacks? I needed (and still need) to calm down in these situations and take the comments as they are meant – as being about my partner and his feelings and not per default against my son and his behavior. I am still working on that.

While I certainly don’t have the answer to a forever happy marriage, here is a link with some suggestions how to stabilize your marriage while raising a special needs child.

Finally, there is the special case that you are not only raising an ASD child, but that you are also married to a – diagnosed or undiagnosed – partner on the spectrum. I know several partnerships like that and it does not make things easier… just imagine more rigid routines, less ability to express emotions and less empathy for the child on top of everything else! There are a couple of interesting books out on the topic, e.g. by Gisela Slater and Katrin Bentley, for those of you knowing or suspecting this to be the case for a certain relationship.

No Moment of Zen – Research about the Stress of Raising an Autistic Child

When you and your partner become parents, you lives change – there are new paths to travel, new experiences to make and new challenges to master. It is a very exciting, joyful and demanding time! You try to balance taking care of your kids with tending to your partnership and maintaining your personal growth. After the first major life adjustment and some subsequent readjustments (most often another child or a change of job situation), you find an equilibrium that works for you and settle into fine-tuning while you watch your children grow up… EEEEEKKKK. Stop right here! If you have a child with special needs, your reality will look VERY different…

Becoming a parent of a child with ASD, means living on the fault line of personal balance. While there may be glimpses of equilibrium, you know that the next earthquake is just around the corner. And while you get better at shatter-proof construction – at least in some parts of your life – there are some tremors that are just too huge to really be prepared for. Plus, as with most things Autism, there is no guarantee that what worked today, will work tomorrow and that your gains will still be there next week.

For a family affected by Autism, there is not the occasional single occasional crisis to overcome, but life is a string of disasters and the State of Emergency becomes a permanent way-of-life. Just like the Autism does not go away, the distress does not either. And while we “grow with our tasks” and learn to cope, we also – sometimes slower, sometimes faster – deplete ourselves with this life-style: as parents, as partners, as individuals.

There is a lot of research out there about what a diagnosis of ASD can do to your family, your partnership and to yourself – from the initial diagnosis to the long-term daily survival. I thought I would give a short overview, so that other families affected by Autism can see that their feelings and experiences are more common than they might think…

There are many first reactions to the diagnosis, but the most typical are: relief (there is a name for it, I am not a bad parents), devastation (this is a life sentence, my child will never be independent), helplessness (where do I go, what I possibly do to help), anger (The doctor must be wrong or Why me) – and any combination of the above, I assume.
As we are all well aware, men and women generally react differently to a crisis, and the same is true for having a child with autism. There is considerable and consistent evidence that mothers experience greater impact than fathers.

Fathers often state that the child’s condition had no significant effect on them personally (or, at most, only since their wives feel stressed). Nothing could be further from the truth for the mothers. For us, it is all – and nothing but – personal. One of the reasons surely being that mothers are the parents who are most likely to be held responsible for their child’s behavior, both by their husbands and by people outside the family. Most often it is the mom that experiences the struggle to get a child dressed, faces feeding issues, transition melt-downs and bears the brunt of humiliation on the play ground while the husband is at work. (And there is no way to describe these battles in words that can do justice to the feelings of frustration, anger, resentment and utter defeat. This inability to share these experience often causes deep disconnect between the partners).

The stress of mothers raising a special needs child is not only well documented, but also obvious, if you ever met one or are one! And Tonmanil estimated an even higher level of significantly elevated stress levels being experienced by two-thirds of mothers. Many require psychotherapy and/or medication down the road. A study by Bromley found over 50% screened positive for significant psychological distress (this was associated with low levels of family support and with bringing up a child with challenging behavior).

Another big difference between mothers and fathers is the adaption of guilt over having created a child with special needs. For most fathers a diagnosis only changes their attitude for the future (i. e. not wanting more children, in case they also have ASD or adjusting expectations and college plans), most of them don’t look back or feel guilty about a diagnosis that can’t be changed anyway. At the same time, I don’t think there is a single autism mother out there that hasn’t at least once played the game of “Where did it go wrong?” and looked into the many theories about Autism causes (age, vaccines, pollution, pitocin etc) and said “If that’s really the cause for Autism, my child’s problems are all my fault.”
And since this feeling of guilt is a FEELING and therefore irrational as well as – in the eyes of most male partners – completely nonconstructive and energy-draining, this point becomes another battleground connected with Autism, where non-validated feelings might lead to marital tension. I will talk about the stress of raising a child with ASD and its effect on marriage in my next blog!

Family Life with an Asperger’s Child – Routines to Survive?

Just as an ASD child looks, at first glance, like a neurotypical child, family life with a child affected by Asperger’s appears from the outside quite normal (at least most of the time). But in reality, everyday life with anybody on the spectrum is a dance on thin ice.

Parents and siblings over time become experts in prevention of aggressive outbreaks, melt-downs and/or anxiety attacks. Everybody ends up – consciously or unconsciously – bending their behavior, reactions, verbal and body language around the ASD person to shield them and themselves as much as possible from the explosive possibility of transition screams, excursion refusals, homework disasters, dinner melt-downs, TV nightmares and bed-time battles. Parents go through elaborate procedures to ensure that everything is in its place and routines stay the same.

It all starts very innocuous, by doing what many other parents do: We cut out tags that irritate, we quickly replace the favorite toy that broke, we cut up sandwiches in the correct shape, we serve their favorite chicken nuggets, we buy the toothbrush in the favorite color or we let them watch their favorite TV show at a certain time.

However, slowly but surely with an ASD child – it is hard to notice when you cross the line – certain preferences are not outgrown, but solidify into a must-be-this-way-or-I-explode. So we are faced with buying only that cereal in the red box or nothing will be eaten for breakfast, searching a certain brand of socks because all others don’t feel right, having to be home on time for that TV show, playing every song from the favorite CD in the car three times, switching all light on and off twice before leaving the house … and all of a sudden, confined in almost impossible restraints on your life, you think – how did I get here?

So then you are faced with a decision: try to hang on to your sanity and break the cycle by insisting on a change, but face ongoing melt-downs and refusals to leave/eat/sleep/dress – or keep everything the way it was, with a fairly smooth sailing routine, but paint yourself into a corner of ever increasing obsessive-compulsive behaviors. It is not as easy an decision as it might seem. If you yourself are overtired and stressed, have to go to work on time or have other children to take care of, it often seems that conforming is much easier. It is certainly more predictable since you are the one that does all the work. If your child gets worked up, there is no telling how long the melt-down will last and what other ripple effects this will cause in your family. However as you realize that the routines get more bizarre since you can’t help the downward spiral or if you get the unfiltered observation of an outsider to refocus for an instant, the shock of how much your home life is ruled by the demands of a child and how incapacitating these routines are for you AND your child, you come to a point where something needs to change. But change isn’t easy. Asperger’s kids are strong willed, insisting on their routines, which after all bring them comfort and take away anxiety, and have thus much more at stake that just “wearing new socks” or “watching a different show”. The common advice of “Just serve nothing else but veggies to them for a couple of days and they will eat them” does not work – if you can’t stand the sensory input of mashed potatoes, the battle is not about food, but changing developed coping mechanisms (“don’t eat this”) for negative input. Overcoming this can take more than a couple of days. Why wouldn’t you fight change with all your might, if only switching the light on and off enables you to control your anxiety?

But, in the end, you must help you child to break though this barrier – slowly, gently, compassionately. If you can’t change routines, you need to at least divert them, expand them, soften them. There is a very fine line – and it is different for every parent and their child – at which you need to intervene if you want to enable your child to live without the constraints of OCD. You might be only able to change one of the routines at a time, it might take weeks and in the end your child might replace the routine with something similar, but you will eventually teach your child to be able to bear a bit of flexibility without an anxiety attack or aggression. If you keep the same routine going without ever challenging it, you won’t give your child the chance to realize they have outgrown it. So in order for them to function in this world – and is that not the ultimate goal for our children? – we need teach them that changes in routine, while not pleasant, are survivable.


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Introduction to Asperger's Sydrome, help and support by a teacher and mother of 2

What does an Aspie look like?

It is hard to tell Asperger’s kids from their peers by just looking at them – they don’t necessary look any different then their NT (neurotypical) friends. They might move a bit awkwardly or fiddle with something, they might not participate in school yard games or sit alone on the bus, but when you come into a controlled classroom setting, they don’t usually draw attention to them, unless they are hyperactive, too.

This is why Asperger’s often does not get diagnosed until the age of 8 or 9 (average age is 11), when the small coping mechanisms developed in early school years do not work anymore. Aspie kids often excel at math and have sometimes taught themselves to read or at least are good a memorizing letters, so that in the primary school years, academics is seldom a problem. Social studies, music or sports are a better indicators of problems – lacking creativity, noise sensitivity and gross motor problems come to light here – but these are often ignored or dismissed (but parents as well as teachers), since the child seems academically on target. When school work gets beyond the pure mechanics of reading or calculating – comprehension of chapter books, creative story telling, text problems in math – the deficits of “theory of mind” are more obvious and performance often take a dramatic drop, resulting in aggressive/frustrated behavior or anxiety to go to school.

But back to how Asperger’s is often invisible at first glance. In contrast to a physically impaired or non-verbal autistic child, our children are usually not recognized in the first 15 min of observation. To the untrained eye, it might even take longer, especially in a society that accepts quirky behavior and has a greater tolerance for deviation from the norm (like the UK versus the US). After a while, however, certain patterns become apparent. Often a child with Asperger’s will have a routine it follows on a playground (always up the same ladder and down the same slide), they might be overly chatty with other children, asking the same question over and over again or persistently telling them about their favorite topic even though the other child has lost interest a while ago. Certain hand motions or repetitive movements, muttering to themselves or sensory issues (not going into the sand or insisting on keeping on a coat) are a little more obvious.

Unfortunately these seemingly normal children often have a propensity to explode into screaming or crying fits or even aggressive behavior – be that for not getting a turn soon enough, getting no or the wrong snack or simply having to leave. While these behaviors are generally accepted for children under 5 and parents give each other a smiling “Been there” nod or chuckle, reactions change dramatically, if your child is older. Once they crossed into school age, your child’s behavior starts turn heads, causes disbelieving whispers and disapproving stares. “Bad mom” – “Can’t control her kid” – “Spoilt brat” – “A good spanking would solve this” – “I would never allow my kid to behave like this in public”. The humiliation you feel and the contempt you see in their eyes, is hard to describe and you leave as soon as possible. But when another person feels righteous and entitled enough to actually tell you, what they think of you, your child and your parenting style – those are moments you never forget. They eat you from the inside, they make you stay up at night and even the snappiest come-back (“Well, he is actually autistic and if you know the secret how to make autistics behave, why don’t you write a book about it!”) will never erase the pain and humiliation you felt at the line in the supermarket. Most likely you will cry in the car on the way home, tell your husband and maybe your best friend, come up with an even snappier comeback for the next time and then go back to life the best you can after a horrible night.

I have avoided certain play grounds at certain times of the day, because of the mothers I would meet there, I have left many birthday parties early and hosted most playdates at my house in order to avoid the stares. But sometimes, there is no way around them: You still have to face the bus stop moms the next day after you child threw a fit a pick-up, you still have to see the same moms again at music group or mini gym (at least until the course is over) – and in those cases, there has often come a time (probably after the second or third ‘incident’) where I told people about the diagnosis and life gets a bit better. After “the talk” it is only the kids that still make comments or stare, while their parents are embarrassed and tell them to be quiet.


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Raising a child with Asperger’s Syndrom

Welcome to the schizophrenic world of an Asperger’s Syndrom mother, where every day is spent on the roller-coaster of “he will never function in society” to “everything will work out fine” and back down.

In recent years, ASD (Autism Spectrum Disorder, which includes Autism, Asperger’s and PDD-NOS) awareness has risen, but the range of impairment under this acronym varies a lot from child to child. This big umbrella diagnosis encompasses children from the non-verbal, aggressive, severely handicapped to the suicidal, clumsy, shy kids. Practically every ASD case has to be viewed as an individual combination of traits, though there are similarities: obsessive-compulsive behaviour, social awkwardness, transition issues, anxiety or raging temper-tantrums – often not all at once, but in various combination.

Asperger’s is often seen as “the Geek Syndrom” and claims are made – postmortem – that many famous people were Aspies: Mozart, Kafka, Nietzsche, Van Gogh, Newton, Einstein!? Because of this widely accepted view of Asperger’s as an indication of above-average intelligence, a confession of the diagnosis is often followed by the – expressed or implied – question of “So what’s his/her special talent?”.

Many parents are baffled, even embarrassed by this question. Not every Aspie is a genius and not every genius is an Aspie. (There are no studies out, but many of the spelling and geography bee contestants are clearly on the spectrum, but that does NOT mean only autistic minds can achieve highly specialized memory skills).

It seems that adults/parents are more willing to forgive deficits in social behavior, if there is another talent, especially if it is academic. This, however, is not the case for children. They do, mostly, not forgive aberrance of the norm – be it a deficit or a special talent – and the inability to read social clues and/or unwillingness to participate in the game that is school yard politics, marks most ASD children as outcasts.

An Asperger child is often a loner, by himself in the corner of the playground – which is fine as long as they want to be. The parental heart-break starts when you watch your child desperately trying to make a connection, only to be rejected or get ridiculed. Worst are the moments when you realize that the attention other children were paying to your child and which you were so happy to hear about, turn out to be mean, ridiculing and disingenious, but your child was not able to identify the difference. Reading social clues, something that comes natural to most of us, is hard (sometimes I even think impossible) to teach and requires patience of all – child, parent and possible friend.

It is hard to gauge as a parent how much you should help your child to form these bonds. Should you make playdates at your house desirable with the best toys, the greatest foods and the funniest entertainment? Or is that bribery? And most importantly, will the other child see through all this and come for the gimmicks, but ignore you child just the same outside of your home?

Blessed are those who have a sibling than can lead and defend or who find a friend that is willing to accept quirkiness.

Coming up in the next blogs (so please subscribe to this blog): Family life & ASD, biomed, transition issues, special diets, IEPs …and how to find some humor in it all!?


Introduction to Asperger's Sydrome, help and support by a teacher and mother of 2


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