Autism Genetic

I red on this site an article stating that Autism is highly genetic. If so, then maybe the diagnostic process should be changed. Especially the part of parental input. If Autism runs in families, then it's absolutely expected and probable, that parents of an assessed person will tell the assessor "but my son/ daughter is perfectly normal! There is nothing wrong with them!". I don't say, that parental input is totally irrelevant,  but sometimes it's the reason, why someone does not get the diagnosis and support. 

Parents often compare their children to themselves and consider their child's behaviour normal. Additionally parents often take suggestions that their son/daughter may have mental health issues, as an offence. This is the case with my mom. My behaviour in my childhood was very much different and often problematic. I heard my teachers telling my mom that they think, that im autistic. Although it was in mid nineties. She got mad and said, that the "stupid school psychologist tells her some bs". 

I was multiple times in life diagnosed, misdiagnosed,  there was depression,  tourette,  suspected epilepsy,  turned out- not, and I'm still in diagnostic process waiting to be finally properly diagnosed, 20 years after first contact with mental health professionals. 

Because of the demand (from many clinics) for an informant, many people, even in desperate situations are being cut off the support they need. I think, this should change, I hope it will. 

For my mom the fact, that I didn't like being taken on arms or lap as a baby and toddler wasn't problematic or alarming. More than half of my family aren't fans of physical contact. My mom, my sister, me, my grand parents. There was never any complain or thought,  that there might be something wrong,  because I protested as soon as taken on arms or lap. Just an example of how the symptoms get overlooked by tge family. Additionally, the family members often get used to someone's behaviour and needs. So for them "it's just me".

Parents
  • If Autism runs in families, then it's absolutely expected and probable, that parents of an assessed person will tell the assessor "but my son/ daughter is perfectly normal!

    I thought my family was 'normal' [and so did they apparently!] too, until I went to school and quickly discovered ours was out of kilter with the rest of our community. I agree, family ought not to be part of the diagnosis for the reasons you point out. However, the clinician needs to assess whether family are part of the 'problems' the diagnosed person is experiencing, or if they will prove helpful toward whatever outcome/progress is needed. Some families are ignorant of how they operate; some are just ignorant  and don't want to change, and some are damaged and enjoy being that way. It is helpful for a clinician to know this. And, from experience, as soon as you are old enough, you can 'divorce' parents [or anyone damaging your life]. Equally, you can 'adopt' people as surrogate family.

Reply
  • If Autism runs in families, then it's absolutely expected and probable, that parents of an assessed person will tell the assessor "but my son/ daughter is perfectly normal!

    I thought my family was 'normal' [and so did they apparently!] too, until I went to school and quickly discovered ours was out of kilter with the rest of our community. I agree, family ought not to be part of the diagnosis for the reasons you point out. However, the clinician needs to assess whether family are part of the 'problems' the diagnosed person is experiencing, or if they will prove helpful toward whatever outcome/progress is needed. Some families are ignorant of how they operate; some are just ignorant  and don't want to change, and some are damaged and enjoy being that way. It is helpful for a clinician to know this. And, from experience, as soon as you are old enough, you can 'divorce' parents [or anyone damaging your life]. Equally, you can 'adopt' people as surrogate family.

Children
  • Yes, I informed my assessor,  that I don't have any informant who knows me from my childhood. She is experienced assessing adults and is very much aware of the problems with the family. I told her absolutely honestly,  that my mom ignores my problems and believes that I couldn't possibly be autistic. I didn't consider any lying, that I don't have contact with her anymore etc,  just honestly wrote her. I was afraid she wouldn't take me seriously or refuse diagnosing me. But to my surprise and relief she understands the situation. It's now little more than one month till my planned assessment. I hope it will go well. I'm afraid of disruptions such as flu and postpone. We gonna meet in person in her office. It's far away from me, but I think it's very important for an assessor to be able to observe my body, reactions, mimic etc.