“He’s just being a boy”/ “he’s a typical teenager”. Aaaaaargh!

[CanICelebrate]

First issue: My lovely ds has adhd and I’ve known for years, despite his primary school telling me he wasn’t “naughty enough” to have it (yes that is what they actually said). He’s now about to be assessed and formally diagnosed and his secondary school are amazing - they are pretty much 100% sure he has it. The problem I have is other people who we’ve told keep saying “no he hasn’t, he’s just being a boy” because he’s fidgety and chatty. They don’t see how much he struggles with focus and I feel so angry that the few close people we’ve told have nearly all reacted like this because ds doesn’t fit some of the inaccurate stereotypes of ADHD.

Second issue: My other lovely ds has ocd and asd and again we’ve not told many people but the people we have overwhelmingly don’t believe me. He’s been through camhs and his ocd is really debilitating but apparently he’s “too laid back”, “doesn’t come across as anxious”, “too sociable to be autistic” or “just a typical teenager”. I’m actually f**king fed up of this now and furious and my boys find life so tough at times. Thankfully their school, psychologist, camhs assessor, gp etc are fully supportive and the boys themselves want to be open with close family and family friends. They are not ashamed of who they are and neither am I.
People are really pissing me off and I want to know WIBU to be firmer with people than feeling I have to defend my dc?
Has anyone else experienced this?
Thanks

[BeforeIPutOnMyMakeup]

Just change the subject and don't talk about your children with those individuals. It's clear they don't understand autistic spectrum disorders. Just be glad you don't have a girl with an ASD.

[zscaler]

YANBU. My cousin wasn’t diagnosed with ADHD until he was an adult and for his whole childhood he was just assumed to be a bit of an airhead, bad at focusing, not attentive, a bit lazy (even though he had boundless energy for passion projects). Once he was diagnosed it made a huge difference to how he saw himself, and how he managed his own life, in a really positive way. YANBU to keep advocating for your son.

[Nottherealslimshady]

People didn't believe me that I have autism! Even after my diagnosis. I had to do it all myself without support, could talk to anyone because they just told me I wasn't. I think partly people think they're trying to be nice, like autism is a bad thing, like how you'd react if someone said they were fat.
And I think some people dont believe it exists and it's just jumping on the bandwagon trying to get special treatment.

Just say 'I think I know my son better than you" or "think I'll take the experts opinion over yours thabks"

Dont get into arguments because people like that think they're right, end of story. But make it clear you're uninterested in their opinion.

[CanICelebrate]

The only people I’ve told are close family and friends as it’s been quite a stressful time as school has been so hard for them, and also very stressful and upsetting for me at times seeing them struggle. I’m just so disappointed in people. I also told their youth club leader broadly about their issues as both boys have been very anxious recently but it’s quite hidden and manifests itself in certain ways. I’m not even sure he believed me so I do actually despair.
I have even asked the boys’ permission before telling people and they’ve been the ones who have told some relatives who’ve them expressed to me that there is nothing ‘wrong’ with them.

[bigbluebus]

I had this reaction from our dentist once about DS (whom she had only met for 10 mins at a time every 6 months for a check up). He needed a small filling so I had a discussion with her about how she would approach the treatment because of his ASD. She told me there was no way DS was on the spectrum! I assured her that after months/years of appointments and assessments and difficulties at school he most definitely was.

[CanICelebrate]

Thanks so much for the replies. I want to get a balance between not keeping their diagnoses a secret but also not feeling I have to justify it. They are both quite comfortable with who they are and the diagnostic process and therapy for ocd has been a part of understanding and accepting themselves. I’m so proud of them.

@BeforeIPutOnMyMakeup my cousin’s dd has asd and she is so misunderstood as she doesn’t fit people’s stereotypes

@Nottherealslimshady I think I have asd (and possibly adhd) too but after the experience with my dc I’m not sure what it would achieve if I get assessed as I’m pretty certain no one would believe me

[CanICelebrate]

@bigbluebus that’s awful People are so rude and thoughtless. My son with ocd really has been unwell with it in the past and we didn’t tell many people at the time. When people have minimised that I get so angry as ocd is so misunderstood and distressing. A family member even made a joke about ocd in front of him 😩

[Sometimeswinning]

Unfortuantly there is still the stigma that adhd is made up. There are even experts who argue about it. It's one of those times that you can either sit down and explain to them or ignore their comments. You're doing the right thing by your children. It's a shame your support network isn't onboard with you. Makes it so much harder for you.

[CaptainCallisto]

I have the exact same thing with DS1, who is autistic. DH's family in particular just won't have it. SIL is a nurse, and apparently that makes her qualified to diagnose him, even though she only sees him for an hour or so at a time about every three months... The people at CAMHS couldn't possibly know more than she does 🙄

We had the same thing at Beavers. The leader questioned me about the forms we'd filled in - "Just checking, you've said here that DS has ASD. He clearly doesn't, so can you amend the forms so they're correct? Only actually diagnosed issues should be on the forms" I nearly pulled him out then and there, but he loves going. About three months after that, DS had a meltdown when he was there (he doesn't lash out, he tends to curl into a tense little ball and make this awful noise like he's in pain) and I had to come and get him. I just looked at the leader and said "You remember how you said this child couldn't possibly be autistic? Believe me now?" Bastard.

[CallingAllEngels]

Yes, I've experienced this. My eldest has ADHD (dx aged 5) and ASD (dx aged 8) and the number of people who when he was a toddler/pre-schooler just told me his behaviour was normal/just being a by when I was on my knees.

Having his primary school tell us that he should be investigated was such a huge relief as everyone else had made me feel it was in my head and everything was hard because we weren't good enough parents.

All the comments were well meaning but uninformed. I still have some friends/colleagues who think DS should be able to do x/y/z and don't understand the limitations it puts on us as a family and the structures we have in place to cope.

Now, I'm just firm with others: "It doesn't work like that in our family" / "it's not the same" (when they tell me about how this or that technique worked with their neurotypical kid).

[CaptainCallisto]

Urgh, there were paragraphs when I wrote that...

[Starlightstarbright1]

My Ds has Adhd and about to get a asd diagnosis ( waiting on final report)

I feel like part of my my Ds has Adhd but not the stereotypical that you think of .

He masks everything so unless you spent a long period of time with him you will miss it.

He fidgets, struggles to sit still focus without continuous reinforcement/ re engaging.

He is much happier without school- the stress that provokes.

But yes I get other people say my Ds does that - yes but you Ds is 5 years younger and it never ends up as extreme. Or I wouldn’t have known.

I just don’t really talk to people about but as it doesn’t help.

[BlankTimes]

Minimising and denial are really common reactions from friends, family, schools, and some medical professionals.

As the parent of a young adult woman, I've 'been there' more times than I can even remember. You'll learn to grow a thicker skin and realise that if the comment isn't coming from someone who is qualified to diagnose the condition in question, then it's not worth listening to.

I agree it's even more difficult when you have a girl as their presentation of ASD is often masked. The latest one we encountered was a couple of years ago from a hospital consultant. They asked DD to describe her day, she did, but it wasn't a comprehensive description, so I chipped in to say she can't be left alone, can't answer the phone or answer the door. They snapped "Don't be ridiculous, of course she can do that"

A different specialist medic when asked to investigate 'trapped nerve' type shooting pains DD has in her limbs which come out of the blue told her the pain she feels isn't pain because she's autistic. It's not pain, it's just a different sensation. Both DD and I know the difference between a sensory issue which has a cause and this actual real pain that has no apparent cause and which happens when seated, standing, moving or still, however that medic just wrongly assumed it was a sensory sensation and would not budge from that conclusion.

CanICelebrate the best way I've found for dealing with all of the ridiculous things other people say about my DD is to drastically lower my expectations of their comprehension of her conditions and just ignore their opinions.

[OscarWildesCat]

Same boat here as your 1st issue, waiting on formal diagnosis. I was discussing it with a friend who’s a teacher and she was so unbelievably rude about it that I ended up in tears. According to my friends, “he’s just a twat like all teenage boys” and I am being “totally unreasonable for wanting a label for him”. I hear you OP and I’m reading replies with interest. Best of luck to you and your DC.

[Gatehouse77]

I’ve had similar from only a couple of people (thankfully) about DS’s depression. When he has come along to a family event and, to the casual observer, seems absolutely fine.

What they didn’t see was all the efforts it took to get him there - the cajoling, the time checks, the talking it through before, having an exit plan if needed, etc.

Equally, the times when his mood would plummet after the event because it was exhausting for him to be ’on form’.

I just gloss over those comments now if they’re not interested enough to actually listen. And I hold no value in their opinion so it doesn’t matter what words come out of their mouth.

[Nottherealslimshady]

The diagnosis was really good for me tbh. Obviously having the backup of an expert when having this argument is useful. But also for acceptance of myself and being able to back myself up. I used to push myself into situations I wasn't happy with to appease others whereas not I'm happier saying to others and myself "no minor comfortable doing that and I dont have to" I actually feel less 'faulty' than before.

It's good tour boys are comfortable with who they are speaks volumes for your parenting and their character.

Autistic people mask alot especially around people they're not so comfortable with so I do understand when people think they dont "seem" autistic. But it's not really their place to disagree with parents and specialists. A simple "oh I'd never have guessed, thanks for letting me know" would be 3 million times better.

[curtainsforme]

People say that kind of thing because they think being dismissive is helpful. My nana used to always talk about DD's 'mild' autism and I'm sure she thought them more she said it the more I would believe it 🙄 I tried to broach the subject of me going for an assessment and she shot that down too. 'Oh no, there is nothing wrong with you' ' you are in your 30's, married, a parent, run your own business, you couldn't possible be autistic' (I am) - it's almost as if people see ASD and ADHD as a problem and if they tell us it's not so bad that will reassure us. Despite the fact we are the ones living with it. The biggest problem I have had being autistic and have 2 D.C. who are also diagnosed is getting people to just accept it. Dont try and play it down, just actually believe me.