Should we diagnose?

I am a woman in her 40’s and I suspect my 10 year old son may have autism. I would have said Aspergers but realise that is no longer a diagnosis. I have been researching autism trying to decide if there would be any advantage in a having him diagnosed. I wonder if it would help him understand himself and who he is in the world more or if it would just be a label people misread. During my research it struck me quite unexpectedly that I am Autistic. Well I believe I am and wonder if a diagnosis would help me also. I have always wondered what the hell was going on with me in the world and realising I may be Autistic gave me a great feeling of relief and also a bit of grief for all the time wasted wondering what the hell was going on. Looking back it seems obvious now. I didn’t talk until I was 3 and then spoke in sentences. I’ve always been socially awkward and one of my worst fears in life is small talk. Anyway, I guess that’s it, I don’t want my son to wonder what’s “wrong” with him if a diagnosis could tell him what is different about him instead. Is a diagnosis helpful?

  • Thankyou. I tend to agree knowledge is power. It has certainly worked that way for my sons disability (vision impairment). He happily educates people about his condition and as a result has never been bullied for it. That said, autism is different in that is is often misunderstood and stigmatised and I dread the thought of him seeing himself as anything but the awesome kid he is, aspie or not. Then again, the relief I feel at my own (self) diagnosis makes me think I don’t want him to go through life as I did wondering why things that seem so easy for others are so hard for me.

  • Race , sexuality, gender, and disability are sacred cows nowadays. So kids being kids will find other things to pick on. Weight is a common one. 

  • True. We can hope that kids would be kinder in such circumstances nowadays - bullying still exists, but maybe its causes are different & picking on kids who are different might be less of an issue. But I'm speculating - my kids have grown up and I'm not at all close to what happens for school age children nowadays.

  • Leave me alone! I'm autistic!" & would that have made things wors

    Depends where you grew up, I think, and what your classmates and teachers were like as regards difference. When we grew up there was no PC and no 'diversity'. I  don't  think anybody who wasn't there can understand what it was like to be different then.  

  • Hi Thisisme,

    I can say with 100% certainty as a 50-something diagnosed only this week, that I wish I had known what I know now 10 years ago. That knowledge would have stopped me pushing myself to replicate the behaviours I saw around me and exhausting myself in the process, leading (I believe) to life-stealing anxiety, depression, addictive behaviours and thoughts of suicide. In stark contrast, now that I have an explanatory framework, I want to live forever.

    What I'm less certain of is how valuable this knowledge would have been for me as a younger person. Would I have missed out on trying some things because my knowledge of my make-up would have led to entrenched "limiting beliefs"? I'm not sure. How would I have used the knowledge when I got bullied at school? Would I have naively said "Leave me alone! I'm autistic!" & would that have made things worse?

    But despite these uncertainties, I can't help coming down on the side that says knowledge is power, especially when it comes to self-understanding and self love.

  • I appreciate you sharing this with me, thankyou

  • This is a difficult question:-

    To diagnose opens various other routes (Access to Work as adults, help/support at home/school) depending on the diagnosis (Asperger's/High Functioning Autism or actual Autism within the spectrum).  It may also help identify the co-morbid conditions that early on would help him develop coping mechanisms and identify strengths.

    To not diagnose is useful to just take the individual as they are without any labels.

    i am in my 50's, not yet diagnosed, but need one for my employer to recognise my different diverse nature.

    Good luck whatever you decide.

  • I would imagine that disability support for someone with autism would be different than for someone with a vision impairment. Is there anyone at the school that you could ask about this? The other thing that springs to mind is that someone I know whose teenage boy has Asperger's. He goes to a social skills group once a month with other ASD children which helps him to develop his social skills. Maybe phone the helpline on this website to ask what support he would be entitled to if he had a diagnosis?

  • It is a personal decision.. My diagnosis was only a relief because I was having tests of Mt brain  function to check whether I had Alzheimers or not. Yes I would rather be autistic than have alzheimers. No,, as a high functioning adult with many successes I did not need to know. Yes I have sensory overload but I have lived my life creating my own strategies to deal with that. I wear noise cancelling earphones when I feel exhausted because that is the trigger for my noise overload to take over. I knew my children were high functioning autistics from birth and put things in place for them to help them succeed. IAlthoigh I did not seek a diagnosis when they realised that I was autistic with two sons they said that the level of my ASD meant that there was a high likelihood that my two boys would also be autistic and to ask them to look at being diagnosed. My youngest son, now 21 is definitely autistic but said that he managed life, did not need help and would seek a diag osis later in life if he ever came to need one. My eldest son has struggled for many years with health, OCD, ADHD and with work. He went for diagnosis. They told him he had the cooccurring conditions and they could see his autistic behaviour. However they said his mum-me--was sooo autistic that they could not decide whether he was autistic or had been brought up by an autistic mum whose behaviours would be mirrored by the child. Hence they used the term autistic traits. Sorry for the long post but the moral of my personal tale is to choose carefully, and for what reason, to aim for diag osis. If I had a choice I would have reached out for diagnosis for my children first. The only difference my diagnosis has made is that I am spared the medical route that would have flowed  a diag osis of alzheimers. I have achieved so much in my own life that I have found telling people I know brings either understanding for them of my behaviours or belittling attitudes born of ableism. I wish you well in your choice. Only you can decide whether there is benefit to you or your son. Just be prepared for the double edged sword that diagnosis can bring. 

  • That’s interesting what you say about sensory issues. I have always had sound issues in particular. Loud noise bothers me and I can’t understand what someone is saying if I can’t see their mouth. (Hearing tested apparently I am fine). My son also has sensory issues which I always put down to vision impairment but now am thinking otherwise. Thank you for your feedback. I am glad you found relief with your diagnosis.

  • A lot of my anxiety has been down to not knowing why I suffered with life as I do. After two and half years battling with the NHS for an adult diagnosis I went private, and got a yes, its ASD answer. Massive relief as it now explains everything. Interesting thing is you don't identify with having sensory or other issues. many things discussed in my assessment went along the lines of "what about this?", "isn't everyone like that?", "No", "Oh...", or me saying I don't have that issue and them saying "when do you find yourself in that situation", and me saying "never, I always avoid it". I think if you have lived with it, you have either learnt to live with it and take it as normal or you have worked your life around your issues and managed it well, such as the masking thing. In terns of your son, I would go for it, as it is probably easier to get an assessment for a child than an adult if he then later finds this need to know, and may have bigger issues later on.

    For you, that is down to you. I could not cope with not knowing. I like everything black and white, and had anxiety over my issues and wanted to work out why. Unfortunately the NHS weren't much help so I ended up having to go private which cost quite a bit...

    Good luck with it all and stay positive.

  • My diagnosis in 2017 was Asperger's/ASD. The clinician indicated that she still favoured the term Asperger's in some cases, but wrote both down to make it clearer to any NHS GP who might ever just happen to read it. I somehow doubt that will ever happen, as I am no longer elligible for NHS treatment after years abroad. Yet another fine mess imposed on us by the increasingly wealthy & distant idealogues in big business politics.

  • and best of luck on your diagnosis journey

  • Thank you but that is not my current concern but good to know

  • Hi. I am a 51 year old woman in the middle of diagnosis process 

    I have gone through a phase of blaming my parents for not helping me more when there was clearly something 'wrong' with me at an early age and onwards. If I had known what the deal was I would have lived my life very differently than the catalogue if failures and sadness it has been. I do believe that if you help and support your child to a diagnosis now it can only be for good. 

    Best of luck with both your journeys x

  • You don't have to disclose a diagnosis to employers if this is something you are worried about

  • Thanks for your reply. You are so right about the lightbulb moment! I guess understanding disability support for my son for autism should he be diagnosed and need support is a tricky one. He already receives disability support for a vision impairment so I guess I’m wondering if a diagnosis would help there at all unless there is some specific type of support he would receive for autism that he doesn’t already. Apart from that I suppose I am wondering if a diagnosis is worthwhile solely for self understanding. I believe I would have liked to have been diagnosed earlier for that purpose but don’t know what other effects a diagnosis might have had. maybe I am overthinking the whole thing.

  • Hi there, I’m a 38 year old woman, diagnosed with Aspergers at the end of last year. I do believe that some assessment centres are still diagnosing Aspergers until the ICD-11 comes into effect fully in 2022. Although some have already switched over to the single diagnosis of Autism Spectrum Disorder. It just depends on the centre and the preference of the clinician as to which manual they use as a diagnostic tool. It’s not uncommon, after realising that one family member is autistic to then realise it about other family members too. Once I realised my own autism, I also realised it in my eldest daughter, my youngest has global developmental delay and there is definitely autism in the mix there, my mother, uncle, cousin, etc. It’s a bit of an odd ‘lightbulb moment’ when you realise that you yourself are autistic though isn’t it? Suddenly everything makes complete sense! Personally I would say that getting your son diagnosed would be helpful, it should, in theory, also enable you to get some level of support for him at school, if he ever needs it. It might help him if he goes onto higher education and needs to access disabled students services. Of course it will also help him to understand himself. There are still times now that I wish that I’d been diagnosed when I was a child so that I hadn’t ended up spending my whole life wondering what on earth was the matter with me. Hope this answer helps. Good luck with whatever you decide to do.