Living and Coping with an Autistic Sibling

I grew up in a household of five, my parents and two older brothers. Both have a learning disability, the oldest also having Autism. For those who do not know very much about Autism, it is a condition that renders human contact and interaction with others extremely difficult. The sufferer often cannot make sense of the world around them and will not be able to interpret emotions that the rest of us take for granted, such as tears, a frown or a smile. For that reason, many refer to Autistic children and adults as aloof, who do not appear to care about their peers or their surroundings. They may not actively play with other children or respond when a parent hugs them. Despite the growing number of diagnoses each year, there is still much to learn about Autism. Even with the so-called "Autistic Spectrum" it has a lot of gaps that cannot identify each and every individual. The "higher" end of the spectrum often groups together those who have a milder form of the disorder, called Asperger's Syndrome. Children who suffer from Asperger's are often able to attend mainstream school, but will still be left struggling to cope with problems concerning their social interaction. They may become victims of cruel bullies, who see no reason why they exhibit "weird" or ritualistic behaviours and why they do not join in with extra curricular school activities. On the other end of the spectrum, children and adults will have a more severe form of Autism, which requires round the clock care from family members or professionals. This is the category my brother falls into, although he was not always that way. According to my family, his development appeared fairly normal as a young child and he was allowed a great deal of independence by our parents. My earliest memories are of him riding his bike with me perched on the back with him before I had learned to ride. He also swam, played outside on his own and started talking at a young age. But as he entered his teens he changed completely and lost much of his independence. He no longer rode his bike, he only swam after much encouragement and he stopped talking, except for the occasional word that we were able to coax out of him. He also lost all concept of danger and would quite happily run into a busy road, without any thought to the traffic, if we did not pull him back.

Helping others overcome prejudice

Many people are unfamiliar with Autism, except from what they have seen at the movies. I remember watching "Rain man" with Dustin Hoffman and Tom Cruise and shouting at the TV the whole time. It seemed to be such a biased, one sided account of what Autism is really all about. Not all Autistic people are sauvants with an incredible genius for a particular area in life. A very small percentage are, but the vast majority are not. So I could not easily relate to the portrayal of "Ray". Some aspects were more accurate though, such as the inability of Ray to sustain eye contact and the echolalia (repeating what he had heard) that he exhibited. The best way to educate others about Autism is to simply talk to them and provide as much information as you can about the disorder. When I worked for the National Autistic Society and we took residents out, we had printed cards to give to people if they expressed concern or interest in Autism. That way, our attention was not distracted from the people in our care and we were still able to educate the public.

Challenges facing siblings

Siblings of Autism sufferers have their own challenges to face. Younger or older, they will still often take a back seat to the care that is being offered to their sibling. Parents do not deliberately choose to exclude any of their children. But a child with a special need will require greater care and supervision than a child who is able to function more independently. Having said that, parents must try not to neglect any of their children and realize that all of them have their own particular needs that should be cared for. I spent my childhood helping my parents take care of my brothers, such as preparing meals, helping to bathe them and putting them to bed. I would even discipline them, as they did not always respond favourably to our parents. I suppose I had a more authoritative voice because they often listened to me! Consistency is definitely the key. With all children, they know if one parent says "yes" and the other says "no". It is good to remember that Autistic children are no different in this regard. They will try to see how far they can get and it is the job of parents to make sure they receive consistent discipline, otherwise it will be harder to manage them.

Professional care or home care

Not all parents will be able to provide indefinite care for their Autistic children. It is not a sign of failure if they decide to put their child into care. It shows that they are putting their child's needs first . My brother was put into care at the age of 14 and has been there for the last 20 years. He receives round the clock care, aromatherapy, he visits a day centre during the week and he has learned Makaton, a form of Sign Language. He could not have had these opportunities if he had stayed at home. Although he will never be the brother he once was, I love him and am proud of all that he has achieved. He also comes home for visits every once in a while.

Dealing with jealousy

It is natural to feel resentment and jealousy for your Autistic sibling, especially as a child. It can seem so unfair when they are able to throw a tantrum and get away with it and you get punished for a lot less. I know that's how I used to feel! But as you grow older, you will hopefully see that your parents just treated you according to your abilities and understanding. Your sibling did not know that throwing a tantrum was not a good idea. You likely knew better. So that is why you were punished. Helping your parents care for your sibling should help alleviate these feelings and make you see that you can do some good in your family, give your tired parents a break and this in turn will help you learn to share your time and resources in a worthy manner. I know that is how I felt. It also gives you an insight into others who are less fortunate than you are. For example, if you see a child or adult out in public act in a peculiar way you are less likely to stare at them and wonder what is going on. You will know that the person has a special need of some sort and you will feel empathy for them and for their parent, sibling or other care-giver. Having a personal incite into Autism can also make you a more mature and capable member of society. I doubt whether I would be the person I am today had it not been for my two brothers.

Benefits

Another benefit of living and dealing with an Autistic sibling is that you may then want to enter the care profession. When I was 15 years old I told my Dad that I wanted to work with people who have learning disabilities of some kind. He thought I was crazy and wondered why I would want to stay in that environment after all we had been through as a family, the sleepless nights, the bad behaviour and so forth. But I told him I was serious and I would enjoy helping others, as I was accustomed to doing at home. As a result, my school arranged for me to work at a special school as part of my work experience placement. I loved it. It simply reinforced my belief in my future career aspirations. After I graduated from university, I started working for the National Autistic Society in the UK and I enjoyed it. I cannot say that I loved every minute of it, as I had to deal with a lot of challenging behaviours and I was hurt a few times, but not badly. I remember my manager telling me once that I had dealt with a particular problem very well and had managed to diffuse a potentially dangerous situation. Remember that if a person with Autism lashes out in a violent way that it was not a spontaneous act, even if that is how it seems to you. Something led up to it. Did you shout at the person? Did you give them complicated instructions that they could not easily process?

Do's and don'ts

This will not come naturally to everyone, but there is a need to treat your sibling with kindness and understanding, even when you feel frustrated and annoyed by the way they are acting. The temptation is to raise your voice and let them know how annoyed and upset you are with them. This will probably backfire on you. Autism is a disorder that involves an inability to empathize and relate effectively to others, so do not expect your sibling to acknowledge their error and apologize. This will probably not happen. You are the one who should be in control of the situation. Hopefully, you and your family have effective strategies in place to help deal with problems in a non-confrontational manner. Time out may work. Sending them to their room could be another technique. Remember that your sibling has rights too, so respect these rights, as you yourself would expect to be respected.

Structure

Whether your Autistic sibling lives at home or has been put into care, it is important that they have a structured routine planned for each day. This will give them stability and a real focus from day to day. Using the TEACCH scheme is an excellent method and works well with a lot of people. It is basically a board with the days and times printed on it with cards that contain pictures of daily activities, ranging from breakfast to bedtime. Each card has a Velcro backing that can be placed on the board in the appropriate position, depending on what is happening that day. Family members or care-givers can lead the person to the board and show them what will be happening on any particular day and help the person assemble and dissemble the board, aiding in their own routine. From personal experience I have seen how using this system can help reduce anxiety. A picture can tell so much, after all. Even without TEACCH, try to provide structure for your sibling's day and help them make sense of what is going on in their life. This will help alleviate feelings of boredom, frustration and anxiety, that more often than not is displayed in aggression and other forms of challenging behaviour. Think of how you would feel if you were just stuck at home all day with nothing to occupy your mind or your senses. Wouldn't you get bored? Even though you did not ask to have a sibling who suffers from Autism they did not choose to be this way either. Learn to accept and love your sibling for who they are and for the attributes that make them so unique. Try to make a positive difference to their lives. You will not regret it and they will look to you as one of the many strong support networks in their lives that they can rely on.