What advantages are there to receiving an autism diagnosis?

[AlwaysTheGoodGirl]

I'm not thinking anything to do with financial or educational support, more a confirmation of the reason behind how my son feels.

I suspect my DS16 is autistic, but have never mentioned it to him. He will often tell me he feels as if he is different to everyone else, and is struggling to make friends at college as there is nobody like him, as he says. He is a high flier academically, and can speak very eloquently to people when he needs to - I was really proud of him at his college interview and he really seemed to impress the principal - but he doesn't know how to just go and chat to someone. There are a lot of other traits that I see in him (and his dad) which I won't go into here. We have been to the GP and discussed anxiety and the option of counselling, but he is determined not to go down that route as he thinks it won't make any difference to him.

I suppose what I'm asking is, has your child felt better / relieved to find out they are autistic? Does is answer their question as to why they feel different to others? I think my son would be really upset to have a label as such, which is why I've never said anything about what I can see in him, and I don't see any advantage for him in going on a waiting list for months or years to ultimately be given a diagnosis which doesn't really help him.

Dd got her diagnosis at 14 and it helped her be kind to herself

She's now finished uni and is working but allowing herself to say 'this is because of my autism' rather than 'this is because I'm an idiot or no good at anything' really helped

She's a massive perfectionist but now understands why somethings don't come as easily (usually social things)

My 16 year old DD had her diagnosis this summer. She has found it a relief - she says she knew she was weird but now feels her weirdness is a proper thing - her words! It took 2 years on the NHS waiting list.

Like your DS, she is very academic and combined with rigid discipline around revision, her GCSE results were stellar.

The diagnosing psychiatrist said it might be useful to have a diagnosis when applying for university otherwise it makes little difference. I think it helps her confidence wise and it helps me understand our relationship better.

I'm 37, and was diagnosed at 34. It helped me to apply for flexible working, and to push back on disability grounds when it was initially declined. I now work a 4 day week, but with PIP to top up am paid the same as if I worked 5 days.

In education support is (meant to be) largely needs based.

In work having a diagnosis helps to get reasonable adjustments and also access to work funding.

It can also (although in theory it shouldn't) help with evidence for PIP should he choose to claim.

DD thought she was losing her mind when she started secondary and suddenly couldn't cope with things that were previously easy for her - the school environment I mean, not the work.

I'd always thought it a possibility as she was quirky but put alot of it down to being an only child. She is fabulous in a formal setting and can talk very eloquently. Chatting informally though is a struggle. She came to me having done the autism test online and scoring highly so was very onboard with being assessed. We went private at she was struggling and had the report within about 12 weeks of the initial enquiry. It has brought her peace of mind. She understands herself better. Has learnt to manage her energy levels and triggers so that she largely avoids melt/shut downs.

Financially we didn't apply for anything, the only real financial impacts for us are factoring in travel days and keeping her supplied with noise cancelling headphones.

Academically, she gets access to a small room at lunch time to recharge which is a game changer, gets a bit of TLC from the Send team if she's struggling. Will likely get a small room for her exams. She's academically highly gifted but her processing speed is much lower than her other skills (that knowledge came from a separate WISC V assessment) but still in the 'average' range so not sure whether she'll get extra time yet.

I think a diagnosis is helpful, my DD was diagnosed at 7 years old. As she gets older it's useful for her to know her brain works differently than others.

I think it helped my daughter to understand herself better. She struggled with friendships and her mental health. She got overwhelmed in certain situations (sensory overload) and her diagnosis helped her to realise why she had panic attacks in noisy and crowded situations.

It's helped her friendships too, she's very open about her autism with her friends and they are more understanding when she doesn't get social norms etc.

Thank you for all the replies, it's a lot to think about. I just think that when he tells me he's sad and that there's nothing good happening in his life, for me to suggest he also has autism would be another negative to add to his list. It does need addressing somehow, but I don't know which way to approach it. Can I request an appointment with my GP so that I can discuss DS with her, rather than when DS is there?

It can help to access support @AlwaysTheGoodGirl and many find it useful to have a diagnosis as it can validate feelings/help with coping. However, if your DS is very resistant to diagnosis, it may do more harm than good - it’s a hard call. I would suggest having a straight talk with him about your concerns, if you can, (but be prepared for it to fall on deaf ears).

Having said that, the time to try to get help from CAMHS is now or never, given he is 16. There will be a lot less interest from healthcare professionals once your DS is 18, should he need help. Also, once he’s 18, you will have no say in his care and contact with gps, etc. unless he chooses to involve you.

Sending you best wishes x

Just seen your most recent post. Speaking from experience, please make an appointment with your GP to discuss- do it now whilst she is still able to talk to you. Some GPs are more helpful than others- hopefully yours is accessible and supportive.

I think the main thing is understanding yourself and why you find some things more challenging than others.

I didn't know why I behaved differently, felt differently, understood differently, why I didn't get the unwritten rules and things, and no matter how hard I tried to change myself I was constantly bullied for not getting things right. I had no idea what was wrong with me and thought I was this awful person because I was called so many things by my peers and most teachers and other adults were always exasperated with me being 'me'.

At 19ish I worked it out. But the doc wouldn't send me for assessment.

Without feeling able to tell most people I was most likely autistic, I missed out on being able to be kind to myself, accept myself, understand myself and explain me and my needs and quirks to others whether it was at work, study or in my social life.

I was diagnosed with adhd when my life had completely fallen apart. And was then diagnosed with autism.

After each, I was able to learn more about myself, join groups for people like me and find validation, support, acceptance.

Damage has been done, of course. Leaving ND people ignorant of their neurotype leads most of us (specially girls) being diagnosed with things we don't have (personality disorders, bipolar) and developing actual disorders, like depression, anxiety disorder, ptsd.

I was adamant neither of my kids would go through the life I did. They were both assessed before GCSE. Wasn't an easy road but neither of them are subtle with it.

Thanks @IlovePond I've just been on the phone to my GP - at first the receptionist said she didn't think it would be possible to speak to the doctor without DS's permission, but she went away to ask and came back to tell me the doctor has agreed to see me, so I've got an appointment in two weeks time.

I’m glad you have the appointment @AlwaysTheGoodGirl - good luck and best wishes x

My 14 year old DS hates his recent diagnosis. Says he'll never tell a soul and it hasn't made him feel any better, just even more different. I only made him do the assessment to help with his EHCP application as he needs extra support at school but I didn't expect him to be unhappy about it.

I got mine at 50
It was the final nail in the coffin for a relationship with my parents,who despite my repeated suicide attempts as a teenager,did fuck all to get me help .
It helped me realise all the mistakes I made ,were because I didn't understand myself
An earlier diagnosis and understanding of what autism actually is ,would of had a profound effect on my life.
Instead of fitting myself in to a box ,I could of followed my instincts and understood myself and had a completely different life.
I will never get those years back ,and I'm trapped in a marriage I don't want ,with DC who are more autistic than me and need me to care for them full time .
Had I of know I had autism,hand on heart I would never of had children.
To not understand yourself and how you tick ,puts you at a huge disadvantage

This is what I'm caught between @RudolphsDashing and @Autumnowl He might hate the thought of being diagnosed and make him feel worse about himself, or he might be relieved to have an explanation and wish he'd known years ago. I'm hoping the GP will help me work it out.

You sound like a good and caring mum
Your son is lucky to have you x

Hi I hope you don’t mind me commenting but we think our dd7 is autistic. It’s encouraging to hear your dd has been to uni, I’m worried what the future holds for our dd. Thank you for giving me hope.

For goodness sake, just tell him he has autistic traits and might be autistic and leave him to figure out the rest himself. Clothes have labels so we know how to care for them and it's the same with people. I was diagnosed age 45 and I desperately wish I'd known 30 years before that.

@AlwaysTheGoodGirl I am in a very similar situation with my DD12. Here's what i wrote in a separate thread asking if there's downsides to diagnostic:

I cannot bring myself to putting the subject on the table with her as I know she will take it as a stigma, a judgement, a rejection, if I even suggest looking into it.

FWIW, we hesitated for ~4 years to really look into a diagnostic - if she is autistic, she masks really well. But the tantrums/shutdowns, the very deep need to recharge and chill for hours after school, the fear of over scheduling etc, alexythemia (inability to discuss/ identify emotions), extreme sensitivity to noise and smells, demand avoidance (and utter compliance at school)... it all seems to fit, including huge anxiety driven angry explosions when faced with new, sudden places to visit or activities (unless chosen by her)

But now that we've started the process, unbeknownst to her for now (as I want professionals to help us frame the subject in a way that enrolls her rather than alienates her) I feel like it's the right thing to do, almost like offering her a key that she can open the door with, when she's ready.

School have been very good. They indeed had zero suspicion, but did an in depth survey of the faculty for subtle markers of masked autism and nearly all teachers found elements that match the profile. As a result they will take her out of one of her regular lessons where she does very little because she's already bilingual in that language and give her 1:1s to see how they can customise learning support to her as she's also part of a "gifted" program. That way the intervention is under a "positive label" rather than "deficit - you need to be fixed" kind of positioning - BTW: I believe autism is NOT a deficit, but I fear my daughter would see it that way if we approached it from that angle.

I have a meeting with the GP (w/o daughter) next week to also discuss next step in the diagnosis route. At the end of the day, I want her to learn the coping strategies and emotional regulation, rather than the diagnostic itsself. And I want to learn to parent her better if indeed she has autism.

If you have an update of where you're (both) at @AlwaysTheGoodGirl I'd find a lot of value in you sharing your experience.