My brother is more special than me. He gets to go to all these places and gets out of school a lot. He gets away with everything at home. He even gets more treats and rewards than me. Mum is always with him or doing things with him. He hits me, he never shares but he takes all of my stuff. We miss out on doing things or have to leave early because he has tantrums. People stare because he does embarrassing things. He doesn’t get in trouble the way I do. I always get the blame. Dad says “I should know better” and Mum says “he needs extra help.” It makes me so angry. It makes me sad as well. It’s all about my brother.
Over the years of working with siblings these are some of the general comments I have heard in my rooms. I think parents are absolutely aware of the impact that living with ASD has on siblings but so much of their energy, heart and time must be put into keeping up with appointments, implementing all the strategies their allied health team has recommended, managing behaviour daily and being a teacher or therapist 24/7. This means that there is not much left in the tank at the end of the day. There is so much desire, pressure and need to manage the ASD battle daily, that this becomes life. I know parents are conscious of why they must do these things and that there is little choice, but in the end a sibling is a child and does not fully understand these big adult concepts. To them, it feels like they get less attention, get treated differently and are asked to sacrifice things. And even when I have spoken to very mature siblings, who are amazing supports and do all the right things, there is still that little element of “it’s a little bit not fair.” They feel like the forgotten puzzle piece.
And the truth is, there will be times when it is not fair to be the sibling. And it is OK for them to feel this way. Validate this, speak these words out loud to them, don’t be afraid to admit that you can’t do it all and you know there are times that they miss out or are treated differently. Share with them that there are times that you also feel those “it’s not fair” moments, and it’s OK to think or feel this.
Ensure siblings get the 1-1 time and attention to understand the diagnosis, ask questions, and to have a way to relate to ASD as the sibling. This might be a chat with you, reading books together on ASD, arranging their own appointment with the Psychologist to talk, vent or ask questions, or attending sibling support groups. Do not underestimate that ASD is affecting them, both positively and negatively, even if they do not outwardly show it.
Be conscious of creating special time for siblings. Allocate times that you will spend just the two of you, whether it be to check in with them, talk, play or do something that is their special interest or passion. Priotise their appointments like you would an Occupational Therapy or Speech Pathology session, whether it be taking them to dance class or swimming lessons.
Make them feel important, someone you need on your team to help with some of the challenging times and days. Don’t be afraid to include them in therapies and strategies as I have seen siblings be the best therapists and teachers going around, and are very proud to play this role. Also consider taking a whole family approach. If your child has a reward system, use the same one for their siblings. If they have a special calm down area, build one for their siblings too. If they have a morning visual schedule, make sure siblings do as well. Even if they do not need these tools/strategies it makes them feel included and also does not make your child with ASD feel like the exclusion.
Help them build a relationship with their brother or sister if they are finding it hard to do themselves. Find activities or games that they can do or play in perfect unison with each other. Be conscious that they want to connect with their brother and sister, and being able to connect opens up awareness and understanding. Help them find their role in being part of an ASD family unit.
Most importantly, don’t try and manage the ASD box alone. Work as a family to ensure that everyone’s needs are being met; your child, their siblings, you as parents and your family relationships. ASD will always be a big part of your family’s life, but do not feel guilty for not making every minute of every day about ASD. Don’t let anybody in the family be the forgotten puzzle piece.