My ASD son is singled out as disabled, meanwhile his relatives ASD is kept a secret

[Mysonisnottheoddoneout]

My DS is three and has been diagnosed with autism, he received the diagnosis just before his third birthday because I noticed signs very early on and pushed for early intervention.

Me and DH have long suspected that he is on the spectrum too. DS being assessed and subsequently diagnosed confirmed that to us, alongside the fact that his older son from a previous relationship (8) is currently on the diagnosis pathway for ASD himself as he is very clearly on the spectrum too.

So that's (at least) three members of the family that have autism.

You wouldn't know that though because my DS is the only one that people think is disabled.

DH's ex has never told DSS why he's going to these appointments or needed speech therapy, he's oblivious to the fact he's autistic.

He (and my other DSS) know about my DS having autism though and as such he's looked at as different / disabled and they treat him like a pariah.

If DS is having a meltdown when my step children are round DH will explain to his two sons that DS is struggling with sensory overload / transitioning because of his autism.

When DSS has a meltdown or struggles with transitioning he's just 'upset'

The fact his ASD is being kept from DSS is detrimental anyway in my opinion, shouldn't he know and be able to understand why he struggles with certain things.

FIL came round this morning and we were chatting, he was telling me about his previous nextdoor neighbour who's son had ASD and a learning disability, and how hard it was for the parents who had to call the emergency services multiple times when the young man went into meltdown and smashed up the house.

He said he hopes for our sake (me, DH and DS) that DS doesn't struggle so badly when he gets older.

Meanwhile his son (DH) is stood there nodding along, knowing he's on the spectrum and knowing DSS is too, yet does nothing to point out that actually that may not happen because he doesn't have outbursts like that.

AIBU to be pissed off that my DS' autism is public knowledge yet the others autism is a secret?

My son is not the odd one out

Seeing as there is at least one child per class at my son's school with autism or ADHD it doesn't surprise me. The 1/100 is for all ages I presume and will be high for kids as there as so many adults not diagnosed and we are better at spotting and understanding it now. It would be incredibly sick to pretend to have a child who was autistic for attention but actually I don't think the people on this post are making it up from what I have read.

It's up to the parents what they decide.

They obviously don't want to tell. You need to respect their decision

@Theunamedcat

My ex husband treats our sons different like you i have one with a diagnosis and one not the reality is the one without a diagnosis is the one with a lot of significant issues but he is treated as the "normal" child and the youngest is the "problem" in this case they are both mine but its fucking annoying

Absolutely!

It's bloody sad isn't it.

Is your undiagnosed DC being assessed?

It's a minefield and so frustrating. You have my sympathies.

DSS struggles massively with transitions. Last week he ran into the road and almost got hit by a van because he went into meltdown after being told it was time to turn the computer off and go back to his mum's.

I wasn't home at the time.

After consoling a shell shocked DH when I got back I gently suggested he tried to implement some strategies that prepare DSS for transitions - just like we do with DS. They really help.

He said there's no point unless he gets diagnosed

It's the same with ear defenders.

Both boys are highly sensitive to noise and clasp their hands over the ears if something is loud, they both get inconsolable if we can't stop whatever noise is distressing them.

DS has ear defenders which help him alot and are the difference between a calm day out or an unbearable one.

DSS doesn't have ear defenders 'because he's not diagnosed with anything' and ear defenders are something children only have if they've got something wrong with them

DS gladly takes DS ear defenders when I offer them to him as he finds them helpful but god forbid he has some of his own.

DS has sensory issues stemming from his autism.

"DSS just doesn't like loud noise"

The mind boggles.

I don't get it. Instead of challenging how your DS is treated by the family, you seem to want them to treat your DSS badly too! That's the only reason I can think of for why you want him to have the diagnosis and investigations made public. It doesn't make it 'more fair' for two children to be treated equally badly. It makes it doubly wrong.

You willing the other child to have the diagnosis and be treated the same way, is really not good.

@saraclara

I don't get it. Instead of challenging how your DS is treated by the family, you seem to want them to treat your DSS badly too! That's the only reason I can think of for why you want him to have the diagnosis and investigations made public. It doesn't make it 'more fair' for two children to be treated equally badly. It makes it doubly wrong.

You willing the other child to have the diagnosis and be treated the same way, is really not good.

Exactly!

I totally empathise @Mysonisnottheoddoneout it sounds like your DHs ridged thinking that is causing some of problems. I think you need to keep communicating with him and help him understand your point of view.

I think a lot of people with autism are undiagnosed, I would say around half of my family and almost all on my Ds’s Dad’s side.

OP, You can try educating the PIL about autism, about the types of overwhelm and what triggers it for transitions, sensory overload, how to give instructions etc. so they can be kinder to your son. This explanation of the spectrum is simple enough for them to understand, yet explains how the more "visible to other people" autistic traits are different for every autistic person.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

From experience I found very few family members or close friends were open and interested but the majority weren't, so don't expect an easy time of it.

@saraclara

I don't get it. Instead of challenging how your DS is treated by the family, you seem to want them to treat your DSS badly too! That's the only reason I can think of for why you want him to have the diagnosis and investigations made public. It doesn't make it 'more fair' for two children to be treated equally badly. It makes it doubly wrong.

You willing the other child to have the diagnosis and be treated the same way, is really not good.

Absolutely not.

If people can't see my POV without jumping to the conclusion that I have ill intent then I'm not going to waste my time here.

Thanks.

Thank you Blank & original ❤

@Mysonisnottheoddoneout you always have to Wade through the shitty comments on here to get the to supportive ones x

Mine was 10 at diagnosis and was literally diagnosed in 45 minutes - I think how long diagnosis takes depends on whether you have to go through crappy CAMHs or get to see someone who actually knows what they are looking for, it's a postcode lottery IMO.
I think OP you have to concentrate on your son and what is happening to him. Any insults or leaving him out needs to be addressed rather than concentrating on DSS being autistic or not. You need to talk to your OH about behaviour towards your son and agree how to deal with it. x

@Mysonisnottheoddoneout

I understand OP. Unfortunately there isn’t much you can do regarding your DSS. However you don’t need to wait for your DH to advocate for your son. My PIL and I have occasionally had differences of opinions on parenting. I’ve just said firmly ‘no - I’m not doing that’ and moved on.

In your position I’d challenge every negative treatment of your son.

‘How much do you actually know about autism? What you’ve described is far from typical’

‘Do you think it’s reasonable to single out DS like this?’

Etc.

One possibility you might have to come to terms with is that your advocacy for your son my drive a wedge between you and your husband. I hope not but it’s possible and you should be aware.

@Tal45

I think area is a big factor too. By a fluke our borough has been great. My older DS was referred at nearly 4 and diagnosed at 5.

The EP said ‘I may not be in the position to make a diagnosis today’ and we said that was fine and we wanted it to be right.

After 15 mins with my son he said he had ‘no hesitation’ and that he was one of three 5yo he’d diagnosed after 1 visit 🤣

Neighbouring Boroughs have been terrible for people I know and it’s extremely unfair.

Thank you to those of you have have been kind in your delivery and suggested ways I can improve things for DS. Taken on board.

I'm a bit that anybody would imply, let alone believe, that I want DSS to be treat badly.

With regards to what the above poster says about the speed and efficiency of the diagnostic pathway being essentially a lottery based on where you are, I agree totally.

I first raised concerns about DS before his first birthday, he was doing lots of (what I now know to be) stimming and wasn't meeting milestones like other children his age.

HV acknowledged my concerns but said let's wait and see.

He had a 16 month (I think?) review with her some time later and he was scoring very low.

I'd gone to the GP by this point and raised my concerns there. They referred us to CAHMS. CAHMS referred us to the community paediatrican who saw him in her office when he was 18 months old.

He was diagnosed just before turning three despite us being told the waiting list would be approx 2 years. We were lucky.

In DSS case (different Burrough) concerns were first highlighted by school three years ago. They managed to get him SALT and OT and he has extra help in school but the diagnosis is taking a long time.

This would frustrate me incredibly.

The next time in laws comment on your son's ASD I'd airily throw out "Ah you know they're investigating a genetic component of autism given it often runs in families." and see if that sparks a conversation.

Normally I'd say not to out your DH and DSS especially if they don't have diagnoses yet but the fact that your DH and in laws are so eager to label your DS and change their behaviors to him accordingly would make me struggle massively.

I would think that having a diagnosis puts your son at an advantage here rather than a disadvantage. If your DSS is autistic but nobody is acknowledging as much then he will possibly go through life with people having unreasonable expectations of him, having to mask to muddle along etc. Just a thought as someone who's DP got diagnosed as an adult. To this day his family refer to him as fussy and dramatic when it comes to sensory issues and he's always struggled at work whereas post diagnosis he's been able to ask for reasonable adjustments and is now thriving and very successful in his sector.

@MissBaskinIfYoureNasty

There's no should thank you. We have made that decision for my son with advice from professionals, not strangers from Mumsnet. He's absolutely thriving. We will never use ASD as a label for problematic behaviour. If something is unacceptable then its unacceptable regardless if diagnosis. I won't do my son the disservice of labelling him disabled and lowering standards. He can and does do better than that.

At my last school, there was a kid with parents who were adamant the diagnosis should be kept secret. So much so, they weren't allowed any extra support at all. The poor kid had no idea why they had so many difficulties and often ended up sobbing 'WHY AREN'T I NORMAL? WHAT'S WRONG WITH ME?', thinking they were stupid, dislikeable, weird and stressy (Mental was the phrase they used about themselves), rather than overwhelmed and needing exactly the same level of support and accommodations as their peers with a known diagnosis.

Eventually, one of the other kids who had a known diagnosis said 'You're not mental, you're just Autistic like I am. Do you want to come to my club at lunchtime? We've got games and it's a lot quieter than the lunch hall - you can borrow some ear defenders for assembly as well.'

@saraclara

I don't get it. Instead of challenging how your DS is treated by the family, you seem to want them to treat your DSS badly too! That's the only reason I can think of for why you want him to have the diagnosis and investigations made public. It doesn't make it 'more fair' for two children to be treated equally badly. It makes it doubly wrong.

You willing the other child to have the diagnosis and be treated the same way, is really not good.

If im reading it right she wants them treated equally not drag dss down but put ds up so they are on the same level? Its hard my eldest (undiagnosed) son gets gifts from his dads family my (diagnosed) youngest does not and they wonder why the youngest has nothing to do with his own dad and family his grandad treated him fairly he passed away ds now wont go at all because he cba

@Tal45 and @Merryoldgoat

How can a child possibly be diagnosed with autism in 10 minutes and by one educational psychologist?

For a diagnosis of autism to be reliable, there have to be at least two professionals (who work for the NHS as well as privately) carrying out an assessment, which takes several hours.

If children are being diagnosed in 10 minutes by one educational psychologist, no wonder so many on here have autism.

This is not a criticism of the OP, by the way, just an observation.

Op surely his dad can be a parent and talk to him.

They aren't diagnosed by one professional. My child was seen by an ed psych and speech and language therapist whilst I was seen by a psychologist to take a history. My child was diagnosed in one session but only because it was so obvious. I don't know anyone who says it is really easy to get diagnosed and certainly they are looking for attachment and parenting issues rather than just saying oh look a badly behaved child let's say they are autistic. I got really sick of being labelled as a crap parent by other parents just because of how my son behaved when he was in sensory overload. The school knew otherwise and we worked well together. But it really isnt as simple as some people seem to think. Well, either than or they are being deliberately goady. I can't work out which.

Your problem is with the family singling out your child as disabled and treating him differently because of it.

That's what you need to tackle here.

Your step-son hasn't been diagnosed (yet) and even if he had been, the problem of how your son is being treated would still remain.

Leave your step-son out of this and focus on how your son is being treated and how you might be able to change that.

When you’ve done the research and been through a recent autism education yourself, things that have suddenly become obvious may not be so obvious to other family members who haven’t been looking into it as much as you have.

When my son was diagnosed it suddenly dawned on me that my 35 yr old brother most likely was autistic too. The thought hadn’t even crossed my mum’s mind until I mentioned it, but almost immediately she could see that it explained lots about his personality and some of the more challenging aspects of raising him. My siblings can see it, too. Then we realised, if our brother is nuerodivergent then most likely our father is too as they are very similar and that explains some of his behaviours and disconnected parenting over the years that have baffled us up until the point we connected the dots. A few years after this thought process, I was Googling autism presentation in girls and I realised that I ticked a huge number of the boxes. Another lightbulb moment. So that’s 4 family members over 3 generations. Not all of those members are aware that they might be neurodivergent (difficult to broach that topic with adults who don’t like being ‘told’ things and are rather set in their ways), or are aware but don’t wish to pursue diagnosis or identify as autistic. It’s a very complex individual thing and if someone doesn’t want to identify as autistic or acknowledge it then that is their decision. Your son will be better off for having the knowledge at an early age and being able to have transparent discussions with you.