Published on 12, July, 2020
Following some bad experiences with services, our son (23) has refused to have a full autism assessment or to engage with any other services at all. His informal diagnosis with Asperger's by the last consultant we saw has got me thinking though. There have been lots of issues within my family - in my dad and myself but also more widely in that side of the family - that to me seem to stem from autistic traits that have never actually been seen as such. They've instead been interpreted as family eccentricities or, as one aunt has said, the fact that "We're just a funny family." What this has meant is that there was never really any understanding, support or accommodation of our differences. When these differences led to us doing well, they were praised and applauded, when it all went horribly wrong we very often got blamed. I'm now looking back at things through a different lens and finding it quite horrifying. Is there any literature or other resources on the intergenerational effects of autism? I'm feeling like everything depends upon the diagnosis of individuals but that I could draw out a whole genogram and make some sense of things that way. I'm also feeling shortchanged by a system which has, during the various attempts to help our son, asked questions about family background and current family issues, but never really followed up on these. To me this all seems more like a family affair. Any thoughts?
Hmm... The term "raggedy woman" leaps out. I come from a long line of ragged philosophers. :)
After going through a lot of negative experiences with crisis teams, CMHTs, early intervention teams and various psychotherapists and psychiatrists, my younger son was eventually discharged from services on the basis that there was no evidence of mental illness, just of Asperger's. Their view was that he should go through a full autism assessment but by that time our son was so fed up of services and so mistrustful that he refused to see anyone at all. He also insists that he doesn't have autism and neither needs nor wants any help. Given what he's been through, we are supporting him in this. However, he is extremely withdrawn, his self care is poor and he has no friends or interests outside the house. :(
This means that a nurturing environment is all we can offer for now.
Jenny Butterfly said:I also cling to the belief that acceptance, understanding and the offer of any external help tailored to the individual's own needs and choices must make a difference
And you have offered that nurturing environment for your children, you are overlooking nothing it is just they they and you are being overlooked by others!
Your 23 year old has refused an assessment - has he declosed why? Also, you mention your struggles are you also on the spectrum (sorry if I missed if, if you have mentioned this)
Yes, there's a huge fear of history repeating itself. I also cling to the belief that acceptance, understanding and the offer of any external help tailored to the individual's own needs and choices must make a difference. And yet I see my younger son floundering in much the same ways as one of my long deceased uncles (born into much harsher times in the 1920s). And my older son struggling in many of the ways that I myself did. So I'm wondering what I'm overlooking.
Indeed. I find I can identify crumbs but not see the cake - i.e. the bigger picture.
Not sure either if my better choices were just out of sheer luck or judgement.
I often feel like a child in a woman's body - good proficiency in the functional areas of life and performance of well practiced tasks (i.e. providing on a practical level) but acutely vulnerable in others. That is where the masking comes in. I am well aware of my naivety and risk of being exploited and hurt).
My stupidity on the forum, for example, is me being anxious, plus also trying to alleviate stress, for example, plus also a call to be nice... hey I'm fun and 99% harmless, don't hurt me!
I am a raggedy woman running scared and making it up as I go along.. but each time I fall down and get up again it takes longer to recover.
You are doing your best trying to get the help you need for your sons. I get a fear of history repeating itself from you and the herculean efforts you are making in trying to keep things together.
So, what WOULD help?
Yes, I always felt that the areas in life where I needed guidance were very different from others'. Exams are a good example. The educative process throughout much of my schooling was first we give you the answers, then we give you the questions. If I followed the instructions, I was fine. I have two degrees and a professional accountancy qualification. What I can't do is what others call "thinking on your feet" or, as you say, "common sense". I'm also quite poor at what might be called "general knowledge" and feel like protesting that, well, I only have specific knowledge and why would others expect me to know something if I haven't been told before, just because they've defined it as "general".
I was listening to a talk by Sarah Hendrickx in which she mentioned someone (her dad, I think) telling her the problem was that she was "all 'O' levels and no common sense". And that sounds like me too.
The areas in which I struggle don't tend to be the ones in which advice and guidance are offered. When, however, I fail, there is often a lot of blame and judgement on the basis that the mistake or poor choice was somehow "obvious". :(
My OH says that I may have three degrees and a masters but I have no common sense. I have made some very right choices in my life (thus far) and some real duds! What got me with the latter was that no one stepped in and said anything or offered any guidance.
The genetic aspects also bother me because, looking back over my life and the lives of several others within my family, I can see various examples of times when they were met with incomprehension and blame for things which might very well have been beyond their control. It also makes me wonder whether many of the choices I thought I'd made in life were actually genuine choices at all. I clearly had a whole host of limitations which brought to bear and which also led others to judge me, often along the lines of thinking that, since I was academically able, I must have been willfully ignoring things or deliberately making an issue out of finding difficulty with things the themselves found easy.