Hi, I am wondering what peoples views are on whether autism/ASD is hereditary. My daughter, now 18, was diagnosed age 15. Her assessment came as a result of being an inpatient for a severe eating disorder. 6 months later my son was diagnosed at age 19. Neither my husband or myself have been diagnosed or assessed but I can't help wondering how we managed to bring our lovely children up for 15 years without picking up on the ASD. My daughter was always anxious but it appeared to be manageable. Retrospectively it clearly was not manageable and she ended up very ill.
Anyhow, I was wondering if the reason that we hadn't picked up on any ASD traits is because in our house eveybody's behaviors is perfectly typical. When we discussed how they played as children both my husband and me said to the psychologist 'but doesn't everyone play like that?'. In the tasks that they did for the ADOS they gave responses that we thought were typical responses. My husband has always been widely regarded as eccentric but he has been very fortunate in his employment in that everyone loves him for his eccentricity (including me). I myself am extremely introverted and hate social situations, avoiding them at all costs unless absolutely unavoidable. So I was wondering if the reason why both my children have ASD could be because either me or my husband (or both) unknowingly have it, and maybe that is why we haven't picked it up in our children. That is to say in our house ASD is normal and most others walking through our front door are in effect neuro atypical! I would appreciate your thoughts. Thanks.
Original Prankster said:When going through my own assessment my parents kept saying "We didn't spot anything odd..." and yeah, I can definitely see traits in my parents and grandparents now I know what I'm looking for...
Exactly what my mum is saying. This is why I think the autism Relative questionnaire is flawed.
1. It relies on a parents interpretation of autism. What they notice as odd, strongly depends if they are "normal", or highly likely that they are autistic as pointed out.
So if ASD if hereditary, how would you expect an ASD parent to know about their child's behavior?
Would a qualified clinical psychologist make a wrong questionnaire to diagnose a person's history? A clinician spends years getting a qualification and learning how to form proper research questions. These questions should contain some rigor. I.e. the answers should either support or disprove a theory. Is this person autistic from birth? But the answer should not be open to interpretation unless that personal interpretation is being tested. I would make an assumption that after years of study, No. After years of training of how to formulate proper scientific questions, would it be possible that these questions are this poor?
Seriously? I have a theory. Those questions are used to identify family members with autism.
For example. if testing for color blindness. Why would you ask a family member who might also be colorblind too? If you ask an unknowing colorblind parent if their son could tell the colour. They might well answers yes. Even though it is clear that both are colorblind.
From the Relative Questionaire
12. Could s/he read appropriately for his/her age?
Diagnosed dyslexic at 20. And read with a stutter in class. And often skipped by the teacher. Mum said yes.
15. Did s/he have friends, rather than just acquaintances? Yes No
Apparently, my mum said I had a lot of friends and girlfriends. When asked how many in 40 years came by and said hello, invited me out and I talked about them. 4. Then she followed up by, "you chose not to have friends."
27. Did s/he make normal eye-contact?
My mother has very long periods of looking away. She thinks this is normal.
28. Did s/he have any unusual and repetitious movements?
My mum is often rubbing her arms and wiggling her legs. Stimming
In fact, the whole Relatives Questionaire form seems like a parent interview. And should not be interpreted as an indication that you are autistic or not. and perhaps this is the point.
I have also heard from people who were diagnosed late with autism, from this forum. About the RQ;
1. They could fill in the form themselves in sufficient detail.
2. The clinician ignored the form and gave a diagnosis on the probability of what it actually was they were seeing.
So I would take what is said on the RQ with a large pinch of salt. And so should a diagnosing clinician. Because it says more about the form filler than the subject.
Lastly, it could really reduce ASD waiting times.
Yes. I asked the Autism Team about this (fearing that it might mean I wouldn't get a diagnosis) and they said that they make allowances for factors affecting the parent, including possible autism.
From what they said, I'm not sure that any of the questionnaires are given that much weighting as they're highly subjective and the teams know it. Much of it seems to rely on their "feel for it" which develops as they go through the process. When they interviewed my elderly mother I was there and, although the assessor was noting the answers, there were several occasions when a question would initiate a bit of a discussion.
For example, this meant that when mum (being both protective of me and defensive of her own parenting) said that I had no friends because there were no other children in our street and we lived a long way from the school or that I was on a different level intellectually so of course the other kids couldn't relate, we had a chat around this and it was still ultimately viewed as indicative of autism.
My overall impression was that they were using the questionnaire as a starting point to open things up and that they could reasonably pare it down to fewer questions and more probing and discussion. It would probably still take 2 - 3 hours though.
A lot of research suggests that autism is at least partially genetic, although the levels found range anywhere from 20% to 80% by most accounts. Part of the problem is that autism doesn't appear to be linked to one specific gene, but more likely a combination of genes, and even then, the environment contributes to the presence or absence of autism. It's a complex issue that will take time for fully uncover.
Much love <3
12 is an 'objective' measure e.g. I'd read the entire (5 year) junior school curriculum of non-fiction books by the time I was in the third year so was clearly 'advanced' - that's not open to judgement
15 is mostly objective - using a definition of 'friend' rather than 'acquaintance', though if someone considered what NTs would class an 'acquaintance' as a 'friend' then it could get a 'false negative'
That questionnaire is more use when it's used (correctly) as a checklist - my psychologist was very keen to see old school reports as these provide a 'better' i.e. more objective response.
Asking the parents is a fall-back when objective views are not available.
And it's only part of what's used anyway - as you point out any 'good' clinician with experience will 'know' if someone is ASD or not, but it seems they have to 'follow the process' to make their opinion 'count'
Original Prankster said:12 is an 'objective' measure e.g. I'd read the entire (5 year) primary school curriculum of non-fiction books by the time I was in the third year so was clearly 'advanced' - that's not open to judgement
No, you could read age 15 books at age 4.
No, could not read until 7.
mmm. translation. I'm having a hard time with this ambiguity. Also, I'm knocking my previous clinician, who used these forms filled by my mum. And I am becoming angry at myself for;
a. not challenging her diagnosis and asking for an explanation
b. feeling stupid for bothering her with my assessment
c. not editing what my mum said.
I don't ask questions. There was no discussion. At the end of the assesment, I was diagnosed with social anxiety. I have not received any paperwork. Nothing is on my GP file.
Apologies, I said 'primary' when I meant 'junior' (it was a long time ago!) by age 8 I'd read everything up to age 11
You can always get a second opinion.
For what it's worth, I added 'context' to the responses my parents gave, not least because my mum has a tendency to 'remember' things as she wants them to have been rather than as they actually were...!
She also exhibited quite a lot of 'defensive' attitude - as if my going through this process and getting a diagnosis was somehow directing 'blame' towards her for any difficulties I'd had...
In my personal experience, yes!
It took so long to get to the final diagnostic appointment that, although I'd started out feeling very relaxed about the process, I ended up feeling quite uptight. So, as often when I get anxious about appointments , I wrote out a query list. One list for a positive diagnosis, one for not meeting the threshold. The list for not getting a diagnosis was actually much longer because by that time I was convinced of my autism anyway.
But I was still curious about whether and how they'd allowed for me being female, for me being older, for my counselling training (years of practice, incl. my interpersonal skills being evaluated by tutors) and for my mother anxiously trying to make me feel better (and in the process guide them away from a diagnosis). They had allowed for all of this!
Plus it's on my GP records because I have a copy of the letter that went back to the surgery.
Not sure how I feel about it all but I think that these days I tend to ask a lot of questions, maybe to make up for all those years when I didn't query anything.
Would you want your file updating or are you happy with it as it is? I'm not actually sure how bothered I am. I'm just more pushy these days.