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.