question

[JB]

are there people who have kids with ASD but do not believe in it?

[Kristi Sakai]

Sadly...yes, there are parents whose children have ASD who do not believe in it. I've had the sad experience of speaking to some of them and it's heartbreaking for the child that they are so very much in denial. Sometimes other relatives or professionals in the parent and child's lives often try to explain or offer support, but the parents ademately refuse to believe it's a real disorder or seek help for their child. Sometimes I have had parents come to me after someone has suggested their child might have ASD, they want information and tell me they believe their child DOES have ASD, but then months, years later they still have not pursued a diagnosis and meanwhile the child doesn't get help. If asked why not they may express doubt that the child is doing anything but misbehaving. In some families, one parent believes it and wants to get help, while the other parent refuses and accuses the actively involved parent as "spoiling" the child. Or they may say this is just the "diagnosis de jour". This can also happen in the case of divorced parents where one seeks the diagnosis and the other refuses to accept it, will not participate in the child's therapy or treatment. Although there are wonderfully active dads, we often see this is the case with dads who just cannot handle the diagnosis (especially if they themselves are undiagnosed Aspies) and take off. In other families of divorce a step-parent may refuse to believe ASD is real and it can lead to the child being shipped off to live elsewhere or must endure living under the same roof with others who do not show compassion, understanding and do not provide support.

I met with a young woman diagnosed with Asperger Syndrome as a young teen and her school advisor at a conferenc recently. The parents absolutely refused to make any accommodations for her believing it was merely a made up excuse for her behavior. The counselor would make recommendations saying, "She's anxious, can we please create a structure and schedule so she knows what will happen?" Such as dinner at a predictable time, or letting her know how long she must wait until she could use the computer. The parents refused citing there was no way to predict what time dinner would be and why should their child dictate what the family should do? Night after night they'd say if she'd "behave" she could use the computer (to look up her special interest), but without any clear list of expectations or letting her know WHEN.  So she would ask, "Can I use the computer now?" They'd say, "Not right now." "When?" she'd ask and they'd say vaguely, "Later." She's grow increasingly agitated. They'd threaten her, "If you don't stop asking, if you don't calm down, we won't let you use the computer." Finally reaching the end of her rope after being put off for hours or sometimes even days without being allowed to use the computer she'd desperately ask, "When?!" Only to have her parents say, "That's it. No computer." In this case she had such an enormous meltdown (after waiting all week to use the computer) that the police were called and she was put into foster care. This "out of control", "rebellious" "oppositional" teenager who is in a supportive foster care home (rare) who has a schedule, a routine, clear expectations...is now doing WONDERFULLY well in school and in life.  She was one of the most engaging young people with ASD I've had the pleasure of meeting--clearly an Aspie (mannerisms, speech pattern, focus of interest, etc...) and all the other people in her life were equally enamoured with her and appreciated her gifts (as stated, her counselor was there with her). Her parents still refuse to believe her behavior had anything to do with her ASD, they think the whole thing is "made up" and absolutely refuse to make any accommodations or changes in the home or family life if she returns home.

So the worst relatives for an individual to have in their lives who refuse to believe ASD is real....the parents.

Disclaimer: the parents I meet at conferences and who are actively involved in their children's lives, as far as I know, ALL believe ASD is real :-)