My open letter to all Autism Siblings (MUST READ!)

Dear Siblings,

Let me first start out by saying that you are truly some of the most admirable people I know for assuming a role that requires so much of yourself and your life. You all have never asked for this to be your life and at times I’m sure that you have asked yourself, “Why? What did I do to deserve this life full of chaos, pain, embarrassment and instability?” I’m not ashamed to say that I have asked these same questions and I have had the meltdowns and even the thoughts of wanting to trade my brother for a normal one. However, we all know that this isn’t the reality and we must face the music and deal with the life we were given.

We will never understand why we were chosen to be a sibling of a special needs child and with that we need to hold our heads high, so people can look at us and see someone that has faced adversity head on and conquered it all; the good the bad and the very, very ugly. Lead by example with friends and set a new standard for the way people treat and look at children and adults with special needs. Because we if don’t stand up for them now and in the future then who will?

Remember that you are your special needs siblings’ biggest protector because as siblings you are the closest thing that they have to blood thick love. An extraordinary life long bond should develop with your sibling over time and do all that you can to foster this. Find something that you both like to do and make a moment out of it. I melted at the opportunity to share experiences with my brother Brian because as my only sibling I wanted those memories in my childhood to take along with me to share with my children.

Friends may be hard to keep or maybe you might feel that you don’t want to bring them around because you might be ashamed of what they think of you because of your brother or sister but, the truth is… what kind of friend would judge you by how your brother or sister acted? If they did then, you don’t want them as a friend. Trust me; I have dismissed friends before because of this reason and it makes you a better person for recognizing this early in your life. Do it and don’t be afraid to do it often. True friends will stick around! Please remember that it’s not your sibling’s fault that they have Autism, they never asked for this life full of pain and uncertainly. Don’t blame them for their behaviors because many times they can’t control it. Don’t blame your parents either because the pressures that they experience in their roles as parents, are so tremendous and time consuming. They never asked for this life so, make a pack, bond together and educate others about Autism. Those dirty looks that you might get from people in public are teaching moments about what autism is and how it affects someone’s life.

The innocence and brilliance that our siblings live with are profound and rather unique. They are trapped in a circulator world that has no corners to find an exit. Their world is black and white and they are always misunderstood. No answers to them are right and life is always blurry. So, help them see clearly! As for siblings, stick together and find a Sibshop. These are great opportunities for brothers and sisters of children with special needs to obtain a peer support group that provides education and activities designed around their life. Many of these “celebrations” are to acknowledge all of the contributions that are made by “us”. Sometimes finding someone else that is like you makes you realize that you are not in this life alone. They are huge confident boosters for anyone that attends and usually designed for young children but, dependent on the state that you live some are developed for young adults as well.

In conclusion my friends- remember that whatever goals you have in life no matter how big or small they are you are able to achieve them. You are special and you are able to do anything that you put you mind to. I know that this may sound cheesy but, as siblings we have conquered many challenges but, nothing is too difficult for us. Whatever you may believe in, whether it’s God or a higher being, it was no mistake that you were placed in this sibling role to a special needs child for a reason. You can run away from it or you take it by storm, bend the rules and live a full and happy life. “If you want to make the world a better place, look at yourself and make a change, the late Michael Jackson said.

Make a difference, be inspired and be someone’s inspiration.


God Bless and Much Love!

Challenge : In adulthood, the sibs will become "parents"

Someday, inevitably, it will happen. My parents don’t want to think about it but, its true- the sibling of an autistic child will most likely take on the role of guardian and advocate in the absence of the parent or if the parent is unable due to medical issues. I always felt that anyone I marry has to take that into account. Since my husband was able and willing to take on the challenge of caring for my brother, and in some ways knew what my brother was dealing with I married him. My husband suffers with bio-polar disorder and growing up he was labeled ADHD. So, he tended to be more understanding than most guys because he too was atypical and was treated differently growing up.

My recommendations for parents are to discuss future plans with their children when they reach adulthood. Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, as said in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
I found an article that showed that many of the children that were interviewed showed deep concern for their autistic brothers and sisters. One 15- year old sibling said, “I'm very interested in trying to help find a cure. I'd just like to get a neat little pill someday for my sibling that they can pop in with their apple juice and hopefully be normal." This statement is so true of many siblings. But, I really don’t know what it’s like to have grown up with a normal sibling since it was always, just Brian and I.

Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on his/her own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.
It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.

The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment becomes important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.
It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them as I have previously mentioned. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.

In conclusion, please remember that we siblings need attention too. We are much more aware of what is going on and what expectations are as the “other” child. What parents must understand is be open with your child and talk with them about what you have planned for the future of their atypical sibling. The best conversations I have had with my mom and dad were ones that entailed their vision for what the future holds for Brian.

Picture: My brother Brian, my father and grandfather

Challenge #5: Pressures and Responsibilities as siblings

The pressures and responsibilities that a sibling has to deal throughout their life are no hidden secret. How they deal with the responsibilities clearly depends on how the parents model it themselves. For example, when shopping with my mom one day at a shoe store we noticed a middle-aged man with his special needs son. He wanted a piece a candy that was left for shoppers at the check-out counter. The store clerk gave him a piece a candy after his father said, “yes”. Afterwards he went to his younger sibling and was excited that he got a piece of candy. After he ate the candy, he went back up to his father yet again, with his compulsive like behavior and said, “Another candy, another candy,” while pointing at the box. The father then said in a very stern and loud voice, “no, you already had one piece”, the young man then went to his sibling and asked for a piece of candy”, the sibling repeated the same behavior as their parent and rudely yelled as they rolled their eyes, “No… what did Dad say… You can’t have any more candy.”

My mom and I looked at each other and our heart broke for the young man as we could tell he was crushed as to how he was talked to by his father and then his sibling. That was when my mom asked the father of the special needs son, if he could have a piece of unopened candy that we had grabbed out of the box. He then said, “Sure”. And the young man and his family went on their way. After the situation it made me reflect on what had just happened. It was clear that the sibling was modeling behaviors and actions of their parent. Some of the kids handle the responsibilities well and the others suffer with the pressure and undergo potentially harmful emotional break downs.

Similar to the 1988 comedy-drama Rain Man, written by Barry Morrow and Ronald Bass and directed by Barry Levinson Tom Cruise, who was a brother to a mentally-challenged sibling, he found himself developing an instinct and a level of protectiveness towards his brother when faced with the responsibility of watching over him. The “it’s my job” mentalities for siblings, who step up to the plate when circumstances are challenged usually happen early in ones life. Siblings instincts (like the Tom Cruise’s) usually are kicked into play when faced with a life changing situation or when something bad happens to their siblings. I noticed that I felt much closer to my brother and I was much more protective of him after the horrific episode at the respite care facility. I wanted to find the worker that intentionally bashed his face into that sink and make them feel the pain that we suffered as a family. I really matured and respected him much more for his undoubting innocence.
Responsibilities and pressures of a sibling do come with age, however if the parents model the roles and expectations from day one it usually is picked up more genuinely. Also, it’s the personalities of the siblings that I believe are fashioned to be unique and fierce. To label us “outgoing” I believe is such a loose label however, we are reactive and adaptable to any situation. At this age in my life, nothing and I mean, nothing fazes me on what Brian’s does, says or reactions. I have seen it all and been through it all.

Tip # 3: I'm scared

Challenge # 3

Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. Due to their hyper nature, parents can't possibly keep an eye on their kids every second of every day. For a typical sibling that is scared of their autistic sibling, it's extremely important for parents to take this concern seriously and intervene as appropriate. By talking to your child's pediatrician they will be able to provide you with hotline numbers that you can call if you or in need of help. Also it's really important for your typical child to have a safe place that they can go if they are upset or scared. Whether it's their room, a bathroom or a closet, by creating and identifying a location really helps the typical sibling cope with such chaos that they deal with on a regular basis.

I remember that growing up my escape was going into my room and and putting on my headphones and just listening to music. I would do this for hours at a time until I can relax and be comfortable with a scary situation.

Above photo: Me and Temple Grandin's mother, Eustacia Cutler, Author of "Thorn in my pocket"

Advice for Siblings

For the next several posts I will break down some common concerns and issues that many siblings try to address concluded by recommendations on how to handle them. With the great help, advice and counsel even for me by Henry Ford Behavioral Health Services, Greg Oliver, who is a social worker that has dealt with children and their siblings affected by Autism I hope that you will find my postings helpful.

Challenge #1: "Why won't he play with me?"

It’s not easy having a brother or sister that you can’t play with especially, if you are close in age and don’t have another sibling that will play with you. What is worst is that “play” to one sibling means the total opposite to a sibling that is autistic.

So, what happens when you can’t play with your sibling? Well, our solution is that you find what out what makes your sibling happy and then you can make fun out of it. For example, my brother was obsessed with radio’s and fans. You never saw him too far away from one. What I did to make a game out of his obsessions were singing along to the music on the radio or making noises and talking into the fan after he plugged them in. This way we both enjoyed them and I learned how to play with him. My best advice is to learn how your sibling with autism plays and adapt to it by making it fun for you.