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Son did not meet threshold at 11 but struggling hugely at 20.

NAS87674

My son struggled through primary school until an excellent teacher recognised his difficulties and suggested assessment through the pathway.  The conclusion was that he did not meet the threshold for diagnosis.  Fast forward almost ten years,  and all the traits are still there and now what appears to be autistic burnout has resulted in him losing his job and struggling with all aspects of every day life.  Could he have been misdiagnosed? Could be re assessed or is a no always a no? Could he have been excellent at making? He passed his GCSEs and A Levels after a huge social struggle but is now just stuck.  Any one have a similar experience? 

  • in reply to battybats

    This is good advice,  I think I am going to support him in seeking reassessment as like you he 'coped fine' until  behind closed doors where he wasn't. Thanks for your response!  

  • Sometimes it's those transitions to adolescence and then adulthood that make us really struggle- that's certainly how it was for me, things became much more difficult after the age of about 13 even though I'd had autistic traits since I was very small.

    Given that your son's done A-levels, it sounds like he's pretty academically able- that can sometimes work against people if their assessors have a stereotypical view and/or limited understanding of autism, particularly if that ability has helped them learn how to mask.

    I would definitely look into re-assessment if possible. The first time I tried to get assessed I couldn't even get a referral because I was "coping fine" (I wasn't) but here I am several years later officially diagnosed. Since your son has already been assessed previously it might be a good idea to make a big list of his autistic traits and how they affect his life to provide some evidence of his struggles early on in the process- hopefully that will make sure he's taken seriously.

  • in reply to Luftmentsch

    Thank you so much for taking the time to share your experience and advice.  This helps a lot! 

  • I don't know exactly about your son's situation, but I was assessed in my early twenties and told I did not meet the threshold for diagnosis. Years later, I was also struggling hugely in similar ways (periods of unemployment, jobs that I couldn't cope with and either burnt out or simply made enormous mistakes, few friends and almost no romantic relationships). I researched autism a lot and (to cut a very long story very, very short) managed to get assessed as autistic.

    It is likely that your son was indeed excellent at masking. It is also possible that his difficulties developed later. My understanding is that autistics can lose their ability to cope with sensory sensitivities over the years as they get more exposed to them (I think this happened to me). Also, his difficulties may be situational. I coped with the relatively structured environment of school, especially as I was lucky to find a couple of geeky friends (or rather they found me), but struggled hugely in the less-structured workplace where I was expected to show more initiative and to cope with the complexities of workplace social interactions with people I didn't necessarily have anything in common with. Also, not knowing I was autistic, I found employment in some very unsuitable places, which really didn't help things.

    Re-assessment may be possible, but I think it may vary from place to place under the NHS. I don't know if you can afford a private assessment. If he does seek re-assessment, I would recommend he (or you, if he is too burnt out) does some thorough research on autistic traits and prepares some kind of document showing exactly why he thinks he's autistic. Mine was six pages long, but other people on this site have written much longer ones. Really the longer the better. Show the assessor why you think he fits a diagnosis. This is especially important if he doesn't function well in assessment-type environments -- or if he functions too well and looks like he isn't struggling with interactions e.g. he can force himself to make eye contact. It might help if you can explain things that weren't a problem in his first assessment, but are now or questions he simply wasn't asked that would have been relevant.

    I hope this helps!

  • Hello ,

    Im sorry that your son has been struggling in various ways. I'm sure community members will share their advice and experiences with you. If your son was interested in finding out if he is on the autism spectrum, he would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: 

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis 

     Furthermore, it is important the professional he sees has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: 

    https://www.autism.org.uk/directory 

    All the best,

    ChloeMod