Why

Over the last few weeks and months, I have been asking my self the question. Why my parents didn't seek diagnosis while I was a child. I saw many educational psychologists and other professionals. 

I got through so many pencils, because I used to chew them, my concentration levels at school was poor (it still is). I started school in the late 70's, even at an early age i was struggling, from what i can remember even before I started school there were problems. 

I remember having the struggles of being singled out because my work wasn't up to scratch.  

 I'm now 47 and stuck on a waiting list that is making me feel anxious. 

  • There's probably a few reasons why. Autism wasn't so widely known about 40 years ago. I've also asked myself why I wasn't put forward for assessment as a child - I had selective mutism throughout childhood and most teenage years. But even now that might not be picked up for ASD assessment. I also have an eccentric family, so it's possible this was seen as normal behaviour. What's the problem with a quiet child I suppose. Perhaps you're behaviour wasn't seen as abnormal in your family? 

  • Hi! I was born in the 80s and feel the same. I'd even have to turn the light on and off before I could enter a room. My mum didnt seek any help at all

  • hi Ed, "in those days" im 53 people didnt know otherwise.my mother was an od school S.R.N .i had flash cards up till the age of 6 because i couldnt read,as far as my mum was concerned she would say well his older sister does everything for him,i had the psychologists in junior school,i had the oh he likes to play on his own cos hes too tidy for everyone else.covered my entire bedroom ceiling which was 16ft x 12ft in cigerette packets at the age of ten!!??.they knew something wasnt right but couldnt pin it down .i got diagnosed last year at 52, 6 years after they both passed away so i never got to explain to them.

    if you can afford it go private,i did im still on the NHS waiting list after 2 years.i hope yours is better im sorry that it might sound negative just my own experience.  

  • Being born in the 80s and working with students who were born in the 00's I see these patterns constantly repeating themselves so I don't think its a generational thing. I believe a lot of it is due to:

    • A distinct lack of awareness of how autism presents in different people
    • The underdiagnosis resulting in people thinking autism affects a very small number of the population, thus not looking out for it, leading to ed psychs etc no being trained in how to appropriate questions to find the right diagnosis
    • The current trend for diagnosis MH issues, rather than looking at the big picture

    Some parents have an issue with the label and run away from it. I have a colleague whose son was almost diagnosed at primary school and its written in his notes that its suspected he's autistic. Now he's at secondary school and is demonstrating classic issues inc finding the sensory environment too much, thus, skipping some classes. Lots of MH issues etc. Although she works in disability support and is incredibly kind and compassionate to our students she seems extremely reluctant to accept her sons is probably autistic, although, I'm not sure why.

    In the 60s my father's school approached his mum as they thought he was autistic but his mum refused to go down the diagnostic route. I suspect she is autistic too and didn't want any to suspect this. She didn't live in an area where diversity was embraced.

  • Similar experience here.  Coming from a working class background growing up in the 80s and 90s, the best defence I can put up for my parents is that they simply didn't know about autism.  We didn't have internet back then, and it's not like they were going to pick up a book on a subject they probably wouldn't understand anyway.

    That being said, I remember struggling to read the blackboard in school from a very young age.  I needed glasses obviously, but I just didn't understand why or even have the vocabulary to explain to anyone at that time.  I think I must have been 15 or 16 when I got my first pair of glasses.  It's odd because I remember very vividly there were periodic eye exams in primary school, you'd think they would have picked up my short sightedness and informed my parents.

    I also needed braces as my adult teeth came in at age 9-10, didn't get those until I was a young adult and took it upon myself to get it sorted.  I was never pushed academically either, I suppose they (parents and teachers) thought I was just stupid and not worth the effort.  I think that I could have done much better in school and in life had these obstacles been taken care of by a responsible parent.  It's no wonder I'm depressed.

  • All the reasons people have shared here is why we need to raise awareness of what autism actually is, why it's not to be feared, why it's not "labelling", but unlocks the ability to understand yourself and provide support where support is needed. Otherwise problems can build up until breaking point. It's sad that most of us have to get to breaking point before we find out about ASD.

  • I didn’t get any support at all as a child or teenager because I come from a family where either my behaviour was just accepted as okay or they really were just embarrassed by me and not bothered to help me when distressed. Suspect they are all on the same spectrum really. So to doctors who ask parents about development and believe ‘just normal’ actually means the same as their ‘normal’ I could either scream or give up. Of what use is parental input when they actually have a different mindset themselves? If the parents are undiagnosed ASD for instance, ASD behaviours are normal for that family. It’s only a lot more recently that teachers can have more of an input. It was my brother becoming a teacher and receiving training to spot autism that led to me going for diagnosis. 

  • Go private?

    i had problems I went to school in 1974, in took until the day before my diagnosis at the tender age of 46 for my mum to tell me, that when my parents got divorced and she couldn't afford to send me to the school I was at the nuns told her, I would need to go to a 'special' school, I was 4 years old, I then went to the worst schools in the area I lived, primary and secondary and had the worst education possible, needless to say left school with very little to show, went back to education 9 years later spent 5 years studying for GCSEs A Levels and my nurse training to then find out I was considered special needs all those years ago. I also think the same as you if I had the support would things have been different? Who knows but its made for an interesting journey....

  • Thanks all, yes I am frustrated by the NHS waiting times. Unfortunately I can't afford to go private. 

    However, I have called out my health trust, the published waiting time figures of 5 months from referral to assessment interview. I've been waiting for 9 months.