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

@MissBaskinIfYoureNasty

ASD isn’t a ‘label’ - it’s a life long condition which means your son should be aware of his diagnosis.

My BIL had an adult diagnosis. He said that it explained so many issues he had growing up and said understanding why he felt different could’ve been transforming.

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.

You need to separate your thinking from anything to do with your DSS and whatever condition he may or may not have, as that is between him and his parents.

@Mysonisnottheoddoneout than all that needs to be addressed, is it’s because he’s non verbal they think his understanding is also behind? My toddler is very much like that.

If your other step children call him weird that’s really not on, they need to be educated.

It will not be a quick fix if you SS gets his diagnosis tomorrow then that will not change the interactions with your son, you need to tackle that separately.

@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.

I have no words for this 😱

It sounds like the issue is with the way people treat your son regardless of how they treat the other boy. Of course each child should be treated differently, they will likely require different things from different people even if they are very similar. It's also not your place to be telling anyone about the other boy and his medical needs even if it could be beneficial to your son.
You've chosen to make your son's diagnosed autism public, you ss parents have chosen to keep this currently undiagnosed autism to themselves for now - a diagnosis may change things but if they want to keep it quiet it's up to them. You know autism is a spectrum and it affects each person differently, I know people who it's obvious when you meet them that they have autism while others deliberately disguise it as adults.

What I'm trying to say if that your choice to be public and theirs to be private should not impact you. If people are behaving differently or in a way you don't like towards your child for any reason then cal them out on it, it's all you can do you can't expect them to make ss potential diagnosis public because you did.

My 12 year old has recently been diagnosed. He does not know - as far as he knew he was attending appointments due to the fact he gets anxious and frustrated. He absolutely will not accept that there is anything 'wrong' or different. We decided not to tell him because he would have refused to engage with any practitioners and would refuse any support offered to him. The practitioner was fully supportive of this. We do not intend to tell him until we believe his is able to accept and understand. Until then we are working within the anxiety framework. It is nothing to do with shame or embarrassment - we think at this stage it will do more harm than good. The problem in this case seems to the attitudes of others towards OP's own son which are clearly not OK.

@MissBaskinIfYoureNasty

If he meets the criteria for diagnosis that in itself means he must have difficulties thar he needs assistance with.

I am truly astonished at your post.

My children have autism. They don't know they have autism. It's not that we are ashamed that they have autism. They simply do not have the understanding to digest what having autism means.

My child is old enough to know that he is autistic. We looked at the balance of what he finds challenging because of it and what are the positives, like how loving he is, his imagination and great ability with maths. Until we discussed it properly he saw autism as just being meltdowns and his inability to stay in the classroom. I love the book My Awesome Autism as being a way to generate discussions.

It's also not your place to be telling anyone about the other boy and his medical needs even if it could be beneficial to your son

Can you show me where I said it was my place or that I was planning to tell anyone about DSS? I have no intention to.

Do I think it would benefit DS for his brother to know that they're more alike than he thinks? Absolutely.

Will I tell DSS or anybody else that he has autism? No.

I'm entitled to feel frustrated though and with good reason. I have seen a shift in behaviour toward DS since he was diagnosed and it hurts.

My main problem is with DH. I think he should speak up on DS' behalf when the IL's say such ignorant things due to their perception of autism. There's nothing to say DS is going to grow up to be violent or need the police to attend, and even if he does then that doesn't make him weird or a pariah.

DH is ashamed of having ASD. He certainly isn't open about it. He wouldn't dream of telling his parents how he feels.

Also not having a formal diagnosis doesn't make somebody less autistic, both DS and DSS have been receiving ASD specific support since before dx.

Mysonisnottheoddoneout Why do you think any of that would change if your step son was diagnosed?

Does your husband understand it enough to be able to challenge what is being said? It's tricky and there are so many preconceptions. I think 3-6 were some of the trickiest ages as there were huge meltdowns for us with lots of lashing out of biting when they happened and lots of judgement on us as parents. I learnt to explain how my child's brain worked in a very simple way that helped people understand him and made a difference with family understanding why we were parenting differently to what we might another child. Unfortunately as a parent of a child with additional needs you have to become armoured on the outside and stop caring so much what others think. Explain to the kids why your son is behaving as he is and what they can do to help him and what he likes to play. I used to have to join in games to support my son's involvement in play as he needed that support. Focus on how best to support those relationships yourself. I get you are angry at how he is treated, but your stepsons diagnosis really is nothing to do with the issues you are facing.

It sounds like your DH needs support for his autism too, what were his parents like towards him when he was a child?

I don’t see what’s stopping you putting them straight.

@Happycat1212

Well you’ve posted this before and in the last thread you seemed to desperately want your DSS to be autistic too so that it wasn’t just your child, you seemed to be struggling to deal with the fact your son had been diagnosed and your dss hadn’t so you wanted him to be diagnosed too. You seem to be the one with the issues and constantly comparing them.

This is how it all appears to me too.

If dss mum was telling him and everyone he's autistic before he's officially diagnosed, no doubt she would get vilified for it, so she can't win either way.

If you don't like how your ds is treated you need to deal with that. It's nothing to do with the fact that your dss ex and your dh aren't telling everyone he's autistic.

This website has a disproportionate number of commenters whose children have autism. I find it extraordinary. If Mumsnet was a representative snapshot of society, the country would be bankrupt with the amount of money it was paying out to support all these kids with autism - at least 1 in 2, going by every other post on Mumsnet.

I have owned a nursery for 20 years, and in that time, must have had hundreds, if not thousands, of children on roll. I can think of maybe 10-15 children in 20 years who were either diagnosed with autism (rare in the under 5 age group) or had traits that might lead one to suspect autism. It’s not that common.

I just do not understand how there can be so many parents of autistic children posting comments on one website.

A

@EYProvider

This website has a disproportionate number of commenters whose children have autism. I find it extraordinary. If Mumsnet was a representative snapshot of society, the country would be bankrupt with the amount of money it was paying out to support all these kids with autism - at least 1 in 2, going by every other post on Mumsnet.

I have owned a nursery for 20 years, and in that time, must have had hundreds, if not thousands, of children on roll. I can think of maybe 10-15 children in 20 years who were either diagnosed with autism (rare in the under 5 age group) or had traits that might lead one to suspect autism. It’s not that common.

I just do not understand how there can be so many parents of autistic children posting comments on one website.

One in 100 people are on the autism spectrum.

MN is largely used as a support forum. Parents of children with ASD are more likely to reach out for support.

@EYProvider

This website has a disproportionate number of commenters whose children have autism. I find it extraordinary. If Mumsnet was a representative snapshot of society, the country would be bankrupt with the amount of money it was paying out to support all these kids with autism - at least 1 in 2, going by every other post on Mumsnet.

I have owned a nursery for 20 years, and in that time, must have had hundreds, if not thousands, of children on roll. I can think of maybe 10-15 children in 20 years who were either diagnosed with autism (rare in the under 5 age group) or had traits that might lead one to suspect autism. It’s not that common.

I just do not understand how there can be so many parents of autistic children posting comments on one website.

As you say yourself autism is rarely diagnosed in the under 5s can you clarify what qualifications you have to identify autism in the children who attended your nursery? Did you have a SEN coordinator?

commenters are going to be drawn to the topics about ASD naturally, and why is that a bad thing?

I read that it’s around 1 in a 100 too Op but is that based on diagnosed cases? I would say it’s much more.

@EYProvider

This website has a disproportionate number of commenters whose children have autism. I find it extraordinary. If Mumsnet was a representative snapshot of society, the country would be bankrupt with the amount of money it was paying out to support all these kids with autism - at least 1 in 2, going by every other post on Mumsnet.

I have owned a nursery for 20 years, and in that time, must have had hundreds, if not thousands, of children on roll. I can think of maybe 10-15 children in 20 years who were either diagnosed with autism (rare in the under 5 age group) or had traits that might lead one to suspect autism. It’s not that common.

I just do not understand how there can be so many parents of autistic children posting comments on one website.

I didn’t see a point or offering of help for the OP in that ramble. Is there one?

@Originalusername2021

It sounds like your DH needs support for his autism too, what were his parents like towards him when he was a child?

I don’t see what’s stopping you putting them straight.

They're nice people but clueless with things like SN, he struggled alot and they didn't understand why or seek to. He was seen as an angry child when actually the reason he would bang his head on things or throw himself on the floor is because he was overwhelmed/sensory overload and he needed support.

He struggled in school and never knew why, that made his education miserable.

I think he would be the perfect person to challenge the stigma his parents buy into about autism. He didn't grow up to be unruly or violent, but that's what his parents thinks the future holds for DS.

None of this is about me wanting DSS diagnosed, I'm not concerned about that, I'm thankful that my child is diagnosed actually. It's not about sharing the burden of having an ASD child and knowing it's not just DS, or whatever else people have concluded.

My concern is how DS is treat differently when actually he's not different from his immediate family at all. They are the same.

He's semi verbal at the minute as in he can use one or two words to express his needs but has no back and forth speech.

DSS was quite similar to DS when he was 3 in terms of behaviour and sensory issues although he didn't have any words until after his 4th birthday.

I don't like that DSS sees DS as weird/slow/different due to his delays and the way he is because he was exactly the same.

I can't fathom not telling DS about his diagnosis like some here have chosen to but that's your prerogative I guess.

Just know that when the penny dropped for DH in his late thirties he said he wished he knew when he was young that there was a reason for the way he is.

It's sad to think there are children struggling with day to day life and have no idea why. That must be quite upsetting.

@Originalusername2021

I read that it’s around 1 in a 100 too Op but is that based on diagnosed cases? I would say it’s much more.

Diagnosed cases. I agree with you that the true number is likely to be far higher.

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