To avoid getting my son diagnosed

[fabadababadoodee]

I have a almost 18 year old son and without giving you his life story I have always suspected he was on the spectrum, probably Aspergers.

Has anyone ever got their child diagnosed this late in their life? We have managed him fairly well over his childhood but it's been a huge job!

It's just that he's now come to me asking if I think something is wrong with him because he's been pulled up at his part time job for coming across rude and blunt at times and also for not getting sarcasm.

There is soooo much more I could go into but won't for now, as anyone with a child with autism will know the battles we have faced!

He's interested in joining the police force and my worry is that having a diagnosis will hold him back from this and prevent opportunities in the future.
On the same note I also want him to get the right support in his life moving forward, would a diagnosis make this easier for him to get?

Any advice or stories to share would be much appreciated.
Thanks

i dont tell them this because theyd probably be offended wouldnt they, but I think sometimes you just know

the criteria is made up. Its a construct. It changes according to more advanced knowledge

Ds is 15 and has had his autism assessment this week. It was two hours with a speech and language therapist. She was definitely looking for what I would consider stereotypical autistic characteristics. Ds has quite obvious social interaction issues and also sensory difficulties, anxiety and very rigid behaviour.

If I'm honest I was a little disappointed with the assessment. I expected it to be far more detailed. I think Ds will probably get a diagnosis because she told him to go and do research on asd and he does actually present in quite an obvious way. Not sure how she might have assessed a girl who may present differently though. It almost seemed to be geared to how a younger boy may behave. This is how they assess on our local autism pathway, one 2 hour speech and language appointment and that determines whether you have asd.

As far as diagnosis goes, I wish we had pursued it years ago. Ds has had an awful year at school and his coping mechanisms have really fallen apart. I will always feel guilty for leaving it until now.

It baffles me why anyone would soldier on this long without seeking further investigation.

You have to get a diagnosis for his sake.

A diagnosis will largely protect him and give him something to explain to people/employers etc

I’m all for not over diagnosing but if husbands systems are such that he and others have noticed, then you really must enable him.

the criteria is made up. Its a construct. It changes according to more advanced knowledge

It's either made up or it's based on knowledge

The problem is that the diagnosis criteria are subjective and male orientated. So a girl may be told she doesn't meet the criteria because she has no problems making friends but the clinician doesn't think to ask about her ability to maintain friendships. Boys with autism generally struggle to make friends whereas girls generally struggle to keep them. Both of them feel isolated and lonely and lack normal social connections but how it appears to the outside world is very different.

My brother recently got diagnosed with autism. He's in his mid-40s.

Can I just point out to people that being autistic isn't about being 'quirky' or a 'bit different'. This totally minimises how much we struggle and reduces us to something akin to a cute pet.

Being autistic is a lifelong struggle and affects virtually every aspect of our lives. It is not a label or a medicalisation of who we are. It can affect our ability to access employment, form relationships and access healthcare and education. If you're autistic, you need to know.

@Bostyrone part of the failing was recognising their conduct was not acceptable - they couldn’t understand what they were doing was wrong and felt they were being picked on by me, rather than seeing it as constructive criticism and related training and support.

The role focused on empathy, assumptions and interpretation of data. There are other disciplines which are more rigid, with only a right or wrong which would have suited much better - which I hinted at.

I couldn’t bring it up. What if I was wrong? What if they sued if they perceived it as a discrimination. I did ask if there was anything that they hadn’t disclosed to me - and they said no. HR also advised me not to mention it, but I do wish I could do more for the individual.

The problem is that the diagnosis criteria are subjective and male orientated.
I think the problem is people blurring the lines of a diagnostic criteria. I also think that problem is exacerbated by the wilful misuse of terms like HFA.

I was diagnosed as a young adult and it was protected and helped my in my job. It has also helped me understand myself better. So yes - push for a diagnosis.

Sorry for the typos - it has protected and helped me in my job

I interviewed a man in his early twenties who presented as arrogant and rude. It only occurred to me a couple of hours after the interview that he was most likely on the spectrum.

If I had known before the interview I would have structured it differently to help bring out his strengths.

It is the disability which closes doors not the diagnosis.

Also, I think we should stop using the term 'label' when we mean diagnosis. It is offensive and trivialises the condition.

Some still say if you can make eye contact or you have a sense of humour you're not autistic.

Yep. I was told this 18 months ago by a paediatrician. I do not have the time to reeducate the world ie random strangers judging during a meltdown let alone medics who should bloody well know better

I know of at least 2 families who thought they could manage their children within the family. But guess what, these children eventually become adolescents and then adults. Puberty has been a particularly tricky time for both sets of families - as their children have struggled with identity and sense of self, and heightened rigid thinking. In one family it has manifested itself as severe anxiety and depression, and in another in teen getting heavily involved in some fairly deeply suspect online communities.

If a child is austistic, then diagnosis can only help. It allows access to support networks, allowances in education and from peer groups. Helps to build a sense of self and personal indentity. To understand that your very fixed views on something might be because your brain works differently. Gives a protection against discrimination in the workplace. Lots of advantages.

If a child is austistic, then diagnosis can only help.
I’m going to be honest it hasn’t been helpful for us particularly. There was a lot of is he isn’t he under 7, and I suppose that it helped because we don’t have to have those conversations anymore. Beyond that I don’t see huge benefits for my son. Everyone indifferent though and I know of children who’ve benefitted massively, particularly the more able. I don’t think there is a blanket answerto any of this stuff.

How old is he now? For both of mine it gave them an understanding of themselves that helped them find comfort in their differences.

What an interesting discussion this has turned out to be, thank-you to everyone for your contributions from all perspectives, please keep them coming.

Autism does indeed present very differently in girls and women, on the clinical side, invaluable work has been done by Lorna Wing and is still being carried out by Judith Gould, Daphne Keen and many of the people who follow their research. Unfortunately, like many innovations in the NHS and other fields, it takes an absolute age from something being innovation to it being accepted and in common use.
Many medical professionals involved in the diagnostic process or even some gatekeepers to services have a very fixed and entrenched view of what autism is and will deny a child an assessment based on their own misconceptions. Even today, they entrench all the autism myths like empathy and eye-contact and perpetuate them instead of killing them off, they literally should know better.

The internet has widened the availability of information on autism - although not all of it is great, you need to filter it - and there are very many blogs by autistic people that give a personal view of what their life is like. Youtube is another good source of information on what it's like to be autistic, both from male and female perspectives. Some autistic people are now getting information out there about being autistic themselves and having autistic and NT children, we are the first generation to hear about this. We shouldn't have any reservations about seeking a dx and yet autism is still so very misunderstood by most people that are not directly affected by it and unfortunately by some of those too.

There is huge room for improvement in diagnostics across the board, but as ever cuts are always cited as the reason progress is so slow. 18 months to 2 years waitlist for a NHS child's dx is fairly normal although areas do vary.

@MrsBobDylan I think we should stop using the term 'label' when we mean diagnosis. It is offensive and trivialises the condition
I agree, under the current diagnostics, autism is a disability diagnosed by medical professionals, not something that's labelled like a suitcase or by people making homemade jams and chutneys.

I’m 34 and was diagnosed a couple of years ago. It was traumatic and upsetting initially but has been just so incredibly positive for me to really understand why I’ve tried so hard yet failed at things - I’m not just shit anymore. It’s done a world of good for my self esteem & made me far more self aware & successful in my role.

Thank you @BlankTimes. I am feeling increasingly angry about it. Imagine if a parent said 'I'm concerned about my child and would like to label him.' It would be ridiculous. Yet it is acceptable for people to regularly say 'I don't want to label my child'.

Maybe we could start a 'disability not chutney' MN campaign

The senco at Ds's old primary school used the word label. They were pretty useless full stop though. Ds's reception teacher told me there was something very different about him when he was 4 years old. Not one member of staff offered any advice or support though. So here we are now, Ds is 15 and going through the diagnosis process because things have fallen apart. I believe Ds wouldn't be in this situation now had he been diagnosed when he was younger.

BlankTimes you pretty much summed up Ds's assessment last week. She seemed to be talking a lot about eye contact and empathy etc and nothing about the more subtle stuff. He has such obvious characteristics of asd, I'm not sure why eye contact has to be such a big part of it. He does give eye contact now but he admits that he finds it very hard.

Maybe we could start a 'disability not chutney' MN campaign

Definitely MrsBobDylan and an Autism Bingo scorecard to tick when all of the autism myths are trotted out like no eye contact, no empathy etc.

Punxtawney this is the problem, I was hesitant the other day to quote from or link to the Aspergian website about High Functioning because all the comments referred to HF as a label, then that gets translated in peoples' minds to HFA being a label.
theaspergian.com/2018/09/10/the-journey-begins/
I wonder if 'label' started out in the US then just became incorporated in our daily usage, like 'gotten' and starting sentences with 'So'
One thing's for sure, it's a really derogatory term.

I knew my dd was different from being young, but the HV, GP, friends, family and later school (fine academically and not disruptive so no worries) all fobbed me off until she was 10 years old and I begged her form teacher to actually notice her for a day. All the teacher said was 'You could have a point' and I decided to pursue a dx and absolutely not take no for an answer from then on. For some things, that's still ongoing over 15 years later.
You get the immediate concerns dealt with, there's a period where you think everything's sorted, then other things occur or something that's co-morbid which remained as not that much of a problem suddenly becomes one and you have to start the whole thing again. It's so wearing

BlankTimes you are right it is so wearing and I think sometimes it's hard for those who have not experienced it to understand what it feels like. I feel guilty as at times I wish things were just more normal for Ds. We get so used to his behaviour that it's only when I stand back I can see how much he struggles compared to his peer group. Sorry to hear that things can still be difficult for your Dd.