Teens with ASD: Siblings
The future depends on what we do in the present. - Mahatma Gandhi
The only thing everyone has ever agreed on when your child was diagnosed was that "Early intervention is crucial." Yes, it certainly is, and the learning curve for autism is hugely steep, confusing and time-sensitive. So when you were so immersed in doing everything you could, you had to put your child with ASD first, before the other kids, the bills, work, marriage, friends, community, sleep, and even your sanity on occasion. While not ideal and not what should happen, the reality is that for a few years or more, that's just what happens in most families.
Now that your ASD kiddo is a teen and hopefully progressing nicely, the other kids who got "back-burnered" can now get a greater focus.
My daughter was a typical five year old when her little brother was diagnosed in 1998 and at the time, I had planned to homeschool both of them. When my son got diagnosed, though, I felt like I couldn't do it all so I dropped my daughter in public school and began the 24/7 journey into autism research. Yes, I took some "special time" over the years - ballet, softball, I was even her Girl Scout troop leader - but in all honesty, she certainly got the short end of the stick many times.
Time flies and now it's time to start the college parade for my daughter. So here I sit trying to balance the necessity of college for her against my son's needs. As a parent, I want to tell you, if you are reading this when your ASD child is 3 - do what you have to do to help your affected kid no matter what it costs, no matter what it takes. The more you can heal your child when he or she is young, the better off everyone will be down the road.
What Siblings Would Like Parents and Service Providers to Know is a great read for parents!
Siblings May Need Therapy Too
Siblings of children with disabilities can face extraordinary challenges and may need help in dealing with those issues. Resentment is the number one complaint from siblings as the family's finances, schedule, environment, and just about everything else, usually revolves around the child with a disability. It's not uncommon to hear even the most loving, devoted sibling express that they feel unable to be themselves or complain about anything since their disabled sibling "has it way worse." Siblings need to have autonomy and feel like their own person, with their own rights and dreams and they need a safe place to express those things, just like any other child.
Schools can provide sessions with a counselor or school psychologist; your insurance can cover group or individual sessions and SibShops are available nationwide.
The goal of Sibshops is to address the needs of siblings by allowing them to share, play and learn with other children through relevant, age-appropriate fun activities in a safe, nurturing environment.
Click here to find a local SibShop.
Sibshops: Workshops for Siblings of Children with Special Needs by Donald J. Meyer and Patricia F. Vadasy
Sibling Doesn't Mean Caregiver/Guardian
As parents, we expect siblings to look after each other - "you are your brother's keeper" has been around a very long time for a reason, but there is a difference between a sibling and a caregiver. Parents assuming a sibling will take full responsibility for their brother or sister after they are gone are doing everyone an injustice. Please note that "looking after" or "looking in on," is very different than "having physical custody of." There must be a balance between the child with special needs and the needs of the sibling to dream their own dreams and have their own life, even if that life means he or she is unable to care for your child with ASD. It's great if your children can grow up having a loving, supporting relationship and wanting to help when needed but to raise your non-ASD child to know they are going to have to become de facto parent builds resentment between the children and against the parents, and isn't fair to anyone involved. Please see our adult services section to learn what is available for adults and prepare a special needs trust for your child with autism.
For single parents especially, sometimes there is no respite care available so siblings may have to serve as babysitters to fill in the gaps between school and work hours or even just a break to go to the store. Consider paying your child if he or she is used to babysit. Even if you can't afford to pay with money, pay with extra opportunities for their favorite activities, letting them pick the week's movie rental, have a later bedtime, their favorite pint of ice cream all to themselves, or even a reprieve from a chore may help grease the wheels and show your appreciation.