Personal story about extended family reactions to Asperger's syndrome


Sasha is our beautiful six-year-old daughter. She has Asperger's syndrome, which thankfully was diagnosed early and we have been lucky enough to afford intensive therapies for early intervention. She also got a spot in the local center for Autism Spectrum Disorders where she has done so well they think she may be able to merge into the normal school system eventually, although with support.


A huge problem is that my parents don't think she is doing that well. In fact, my father thinks she is spoilt, lacks discipline and thinks my parenting, or lack thereof, is simply making her worse each year. My mother doesn't quite see it this way, but she has never been able to bond with Sasha and does very little to communicate with her.


It is hard to describe the pain this causes for my wife and me. Sasha is part of who we are, so a rejection or criticism of her is a rejection and criticism of a large part of us. This could easily devastate our relationship with them, and the past few years have seen our fair share of lip biting, arguments and stony silences. This is in comparison with my husband's Greek parents who lavish Sasha with attention and food. They still don't understand Asperger's that well, but just figure 'what kid doesn't have a problem?'


Why can't my parents show the same unconditional love? If Sasha was a paraplegic in a wheelchair, they would be oozing compassion and sympathy for such a brave courageous girl. But because the disability is not visible, they just block her out as though she was simply a mistake of nature!


Asperger's from a grandparent's perspective

Sasha hates gentle cuddles or sitting quietly on mum or dad's lap. She still has trouble with eye contact, and like so many kid's with Asperger's, appears often to be off in her own world. She rarely show interest in what grandma and grandpa might have to say, or in the presents they bring her. What's more, they see a lot of her emotional outbursts when Sasha is overcome by too much noise and motion caused by their visiting.


I can see how this looks from my mom and dad's angle. To them, Sasha is wilfully disobedient, aloof, self-centered and is not being 'smacked into line' by us. A few times we have been out in public and my father has actually gone to hit Sasha when she has started screaming uncontrollably. Thankfully we were able to stop him. Nowadays he will say 'hello Sasha' in a disgusted kind of voice and that's the end of the communication.


My mother tried so hard with Sasha but has given up too. All she will say is things like 'what a shame' and 'at least her brother is normal'. Sasha is extremely sensitive to touch and hates normal hugs and affection. However, she loves rough and tumble play, and with enough of this she will accept firm bear hugs at the end of it. Unfortunately my mum just can't do this - it isn't in her nature. This inability to give Sash affection normally has driven a wedge between them.


Why they don't accept Asperger's in Sasha

Why do they think like this? I think part of it is their generation has a scepticism for the medical establishment and new diagnoses. My father simply refuses to believe in autism or Asperger's. I can show him countless papers, statistics and articles, but no, these kids simply need more punishment. Their generation did rely much more on discipline, punishment and wonderful adages like kids should 'be seen and not heard'.


I think too that they are grieving for Sasha in their own way. Like all of us, they had their expectations of what she would be like, and grow up to be. My father is quite self-centered and loves the awe and admiration he can evoke in the eyes of his other nieces and nephews. My mother simply loves to lavish them with hugs, cuddles and presents - all the things that just don't work with Sasha. I think their rejection of Sasha is tied up with this grief, and complicates the process of adapting to her. I think they do love her in their own way, but their generation often had trouble with deep emotions, talking about them and working through the issues.


How to cope as parents of a daughter with asperger's

My advice to other parents in our situation would be to prepare grandparents early. We were so caught up in the initial Asperger diagnosis and early intervention process that we left mom and dad out of the loop. Ideally we should have been explaining Asperger's to them right from the start, explaining how it affected Sasha, and the sort of responses we would all need to make. We tried this much later and it didn't seem to sink in by then. Maybe early intervention is needed for grandparents as well!


There comes a point where arguing is just destructive. My father is opinionated, self-focused and inflexible, and we've had to accept that and let it go. The hard part is not to resent him or his rejection of Sasha. It is a bit similar to Sasha's screaming in public. We can resent the filthy looks we get from other people and get angry, or simply block it out. Even better, we can respond with understanding and compassion for their lack of insight and understanding. Our faith has helped here. In a way, Sasha has deepened our faith as Catholics as we try to meet ignorance and criticism with love, or at least without a negative reaction. As with Sasha's life, all of this is simply a work in progress!


Click here to read a fact sheet on how extended family can play a key support role.


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A personal story about the pain of grandparents not understanding and accepting a child with Asperger's syndrome, and the need for 'early intervention' in involving extended family members