It’s just dawned on me that both my adult sons and my XH have ASD and I had no idea. Shit.

[lottielady]

This is going to be very difficult to explain without being outing, so please bear with me.

Basically I came across something yesterday evening that led to a discussion with my DS2, during which he informed me that he suspects he has ASD.

Which led me to do a lot of reading.

I now believe both of my adult sons have ASD, and what’s more, so does my XH.

Which makes me feel like the worst person in the world. How could I not have known?

I did suspect with DS2, but for various reasons (mainly XH’s discouragement) I never pursued a diagnosis. Shit mum award. I could have made his life so much easier.

And do I broach the subject with DS1? He’s at uni, has a girlfriend, is brilliant - but there are traits that are going to make relationships hard for him and I’m terrified he’ll end up lonely like his dad.

Pennies dropping all over here. I feel just dreadful. What a failure.

Lottie, I truly believe that I have a fantastic relationship with my children because of all the crap we worked through when they were kids, not knowing about ASD.

Don't beat yourself up.

And re XH, just because it wasn't his fault doesn't mean it wasn't impossible to live with. Even with a DX, you could have made the same decision. My life is so different because of DH and his quirks.

Thank you, picklemepopcorn.

@Springiscomingsoon

You asked about being affected socially.
Generally not being able to pick up on any inferences and hints, literal interpretation, quite fixed thought-patterns. The social impairments of autism can be massive because autistic kids don't think in the same way that NT kids do.

To receive a diagnosis of ASD, the following criteria need to be met.
"Is it autism?
The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning
www.autism.org.uk/about/diagnosis/children.aspx

Communication, as you can see, is featured very highly in the diagnostic process.

Just to comment on a few of the things mentioned upthread,
Autism is a medically diagnosed condition, it's not some random thing someone peels off a jar of jam and sticks on your child, it's a rigorous time-consuming process usually carried out by several medical professionals. Paed, SLT, OT and Ed Psych.

No, everyone is not on the spectrum somewhere. To be diagnosed, you have to meet the above criteria, particularly the bit that says "to the extent that these "limit and impair everyday functioning"
People can have a few traits but that doesn't make them autistic.

A diagnosis can help in school, in FE or Uni and at work for reasonable adjustments. Help in schools should be needs-based but some schools won't implement above a certain level of help without a diagnosis and an EHCP.

Without a diagnosis, some kids with autism are treated as naughty all through school and their autistic behaviour is seen as disruptive and they are punished for it.

If someone is autistic, they are born with it, it's a lifelong condition. A diagnosis cannot make someone autistic, no diagnosis does not mean no autism.

High Functioning does not mean 'can easily pass for NT so has no problems with anything.'

Mild Autism just means other people don't see the struggle behind the scenes.

Autism is often accompanied by other conditions.

Do you want them to be assessed? If not then just carry on as you normally would and have done (and don't refer to them as having asd unless actually diagnosed!)

I'm pretty sure I'm on the spectrum but I'm just me. My son is diagnosed (assessment started at 18 months!) and severe. Diagnosis and a label helps him. Would be pointless for me even if I was diagnosed (which I may not be - none of us can diagnose)

DS seems to want to be at the moment.

From the reading I’ve done, it seems that he has what would have been called Asperger’s in the past.

He struggles with friendships and small talk, has a so-far lifelong obsessive interest in something quite unusual, and is dyspraxic. He’s not keen on nightclubs either - flashing lights, noise and crowds.

A lot of the above we put down to his visual problems, but looking back things are falling into place. He doesn’t read fiction, doesn’t particularly like watching films, when he was very little he never engaged in imaginary play, he would line up his cars and draw very detailed pictures of ‘real-life’ things such as kitchens, etc.

But - he is the kindest, most empathetic person I know. He has a brilliantly developed sense of humour; he’s just so witty. He adores comedy. He has no problem with teasing, and doesn’t take things literally. He makes eye contact with people and most people who get to know him, love him.

He’s passed three A levels, held down two jobs, travelled abroad with friends and he volunteers locally.

He’s an absolute superstar, but I would like him to have the help he should have had, so his life becomes a bit easier. Get some strategies in place, or something. Is this possible?

@BlankTimes thank you for your response.
Best wishes to everyone x

My ds7 has just got his official diagnosis but we've been pretty sure for years. His dad is Aspergic so we always knew it was likely. But DH did not find out until he was in his late 20's. For him it was a relief to understand why he had often felt so at odds with the rest of the world. He didn't come into his own until he got to Uni. I don't have any time for the belief that being autistic means you get a free pass to be a nasty human being. I think knowledge is power. You might find The Complete Guide to Asperger's Syndrome by Tony Atwood useful. But please don't feel guilty about not knowing. My amazing MiL still feels guilt now personally I think she's raised an awesome human being in-spite of everything he threw at her!

I think he can get assessed at Uni.
How is he with flexibility? DS and DH hate plans changing, furniture being rearranged, a new dentist. DS will eat in public at restaurants, but not at less formal gatherings.
It's an important skill in the work place, which causes DH a lot of stress. DH hated the socialising aspect of work, and also anything which needs him to take a bus at a different time. So many small, petty things, but they add up to finding life very stressful.

And it's catching! I'm so used to planning around consistency, I too have become averse to change!

If he wants to pursue dx as an adult, he needs to ask his GP for a referral.
He needs to tell the GP why he thinks he has ASD and why a dx would benefit him ( Things like he's always felt 'different' to other people and wants to know why for his own peace of mind. He also needs reasonable adjustments at work)

He could do the AQ test online and take his results to the GP.
He could get the GP to look for his Dyspraxia dx or take a copy in if you still have it as a lot of ASD and Dyspraxia symptoms overlap.
Dyspraxia is a common co-morbid of ASD, so should give 'weight' for a referral.

Around 18 months to 2 years is an average wait for an adult NHS referral, so crack on. If the GP agrees to refer him, there will be a "gatekeeper" who he will have to see first to rule out any MH conditions, if he gets through that, then his dx appt will proceed.

But - he is the kindest, most empathetic person I know. He has a brilliantly developed sense of humour; he’s just so witty. He adores comedy. He has no problem with teasing, and doesn’t take things literally. He makes eye contact with people and most people who get to know him, love him

The no empathy thing is a myth.
The no eye contact thing is a myth.
The no sense of humour thing is a myth.
They are not involved in the modern diagnostic criteria, they are old and outdated concepts.

DS2 actually thrives on change - DS1 is the one who struggles with it.

Two years. Good Lord.

The NHS ASD adult dx system's overloaded, the child ASD dx services are too. The wait depends on the area you live but 18 months is nothing nowadays.

He could go private, but may still need a GP referral, you could maybe check that out.
www.autism.org.uk/about/diagnosis/adults.aspx

Do not go for an assessment that only tells you it's likely you're on the spectrum, make sure it's a full diagnosis that you're paying for.

Thank you BlankTimes

I'm pretty sure my DS is on the spectrum to some degree - aren't most people to some degree? My brother and nephew are both diagnosed with ASD.
I've no desire to have my DS assessed as he gets along just fine - very intelligent and doing well at school and has a friendship group. I don't want him to be labelled just because he happens to have quirks.

I felt like you. Pigwitch but DS is struggling more than I realised and seems to need a helping hand.

I'm pretty sure my DS is on the spectrum to some degree - aren't most people to some degree?

No, absolutely not, just like it's not possible to be a pregnant to some degree.

As also mentioned upthread, many people have traits, but to be on the spectrum, i.e. to be diagnosed with autism, you need to fulfil the diagnostic criteria. diagnosis is carried out by medical professionals.

See upthread for "labelling" as well.

Both of your comments are very derogatory things to say about people who are medically diagnosed with a neurodevelopmental condition.

Are you being deliberately goady Pigwitch ?

Bangs head against wall, no not every is on the spectrum. To qualify for a diagnosis you must be able to show significant impairment in 3/4 categories (depending on diagnostic system used) m. It’s actually a really hard test to pass! A lot of people would have traits in perhaps 1-2 areas but this would not make you “on the spectrum”. It is like the colour wheel type spectrum, not a line that everyone is on somewhere. To fit on the colour spectrum you can’t just have one colour, you need a mixture of colours!

I got diagnosed at 24 and it changed my life for the better. I stopped being hugely anxious about who I was and my perceived failings, got support from my employer, examined ways I think that can be down to my autistic traits and challenge them sometimes if it will make my life easier. I do not feel guilty or inadequate for taking rests when required or asking for assistance with things other people may find easy!

So, if my DS didn’t ‘pass’ - what would that mean?

That he had autistic traits, but not a full diagnosis. It's all a bit random I sometimes feel.

What is he struggling with? Perhaps he can keep reading up, consider himself as having traits, and learn how to manage it.

To be honest, a full diagnosis doesn't bring much with it that talking to your manager/tutor couldn't achieve. At least that is what DH is finding.

Even if he is or isn’t, it sounds like he has a great family who support him for who he is.

Even if he doesn’t get a diagnosis you can continue to support him in being his full self. It does sound like he would tick a lot of boxes though. If you met me, you would never be able to tell, but I got a diagnosis. The sensory stuff in particular really stands out and dyspraxia is a “comorbid” condition that many people with autism also have.

Do tutors/managers etc have to take people seriously if they don’t have a full dx?

Would he still have access to help etc without an ‘official’ diagnosis?

My DS was diagnosed with HF ASD at the age of 6 - and has spent his entire life trying to hide the label and shake off all the support that has been given to him. In some intstances the so called support probably did more harm than good - it was all down to the individual TA's who were allocated to him. He's 22 now, at Uni, living independently, has a girlfriend and hardly ever contacts us for help. He has travelled abroad both by himself and with his GF and has held down jobs in the school/uni holidays. He never felt that the ASD label fitted him and I have had to insist he declares in on his car/travel insurance as it is on his medical records. Other than that, he doesn't tell anyone about his diagnosis.

So even with a diagnosis/ label there is no guarantee that things would have been better for your DS. He has obviously managed to grow up to be independent and is finding his way in life - which is down to your brilliant parenting!

There are some kind people on this thread. Thank you BigBlueBus

lottielady don’t put any blame on yourself, honestly it won’t help you moving forward, why would you or should you have known?

My DS has Aspergers got a DX at 6 but it was a complete surprise to us, he was referred due to very difficult behaviour which was effecting school.
It was great knowing what it was and having support at school and for us, I did modify my behaviour but also didn’t want DS to spend his whole life with a label.
He is high functioning Aspergers, we moved him aged 12 out of state school into a gentle child focused type of private school (sold out house and moved locations to pay for it) we got rid of his statement and he has since not had much cause to bring up his DX it’s now something he chooses to tell people or not.
He didn’t tell his school when he moved for 6th form, his choice.
He’s now applying to university and he has put his DX on his application as he may need some support getting to grips with living away from home.
He’s not your average teenager doesn’t drink or go out much, but he’s happy in himself and I know there are plenary of others like him. He’s a gamer of course and talks to his gaming friends all the time.
I do wonder what his future will be like, will he have relationships, will he be lonely? But we’ve come so far and I do believe he’s a happy person.
He’s very close to his older brother and I know that they will look out for each other even though they are quite different.
I think know his condition is helpful for him, it may help your sons to know as well.