Self diagnosing her child with a condition.

[GJ14]

Hi all, firstly I am a parent of a child with autism and ADHD so I’m not clueless or ignorant about it all. I understand it’s hard work and I also know how long it can take to get a diagnosis but I can’t help feel annoyed at somebody I know.

She has a son of just turned 5 years old. The school mentioned a couple things about not being able to pay attention for long etc but told her they weren’t really concerned at that age. She then went home to read about adhd and basically self diagnosed him with it and refers to him as ADHD.

He has seen no professional about it (I know covid has made this hard but it started before then). She has literally self diagnosed him.

She’s refers to him as ADHD etc and uses it to to her advantage for sympathy (for her more than him), lets him get away with everything.

I sound really judgemental here and I don’t mean to be as a parent of a child with sen myself I know it can be isolating. Maybe he does have it. Some of the things she has said has suggested he could but I feel it’s too soon when he hasn’t seen a gp let alone a paediatrician, Ed psych etc etc. The school aren’t overly concerned either.

Aibu to be annoyed here? I’ve seen so much online about how people think Adhd doesn’t exist (of course it does!) but no wonder there is this judgement and these kinda views when people are self diagnosing and using it as an excuse?

Just to add, I knew my son had asd and ADHD before a diagnosis and I know how hard it is to get a diagnosis, sometimes you just know. But she has not seen one single professional about it, not one. She’s basically uses google and diagnosed a 4 year old with ADHD (he was 4 when this all started).

I think I just need to vent! Aibu?

[ClamDango]

Is she a close friend who you could talk to to support her getting her son any help if he needs it

[Gancanny]

Perhaps you could signpost her to the relevant services for seeking an assessment? School nursing team would be a good place to start, that way she can get a clearer idea of whether he does have additional needs and, if so, exactly what those needs are.

[GJ14]

I have. She’s not really interested in getting him formally assessed just happy to self diagnose! Baffling 😬

[SofiaAmes]

I would suggest you give her a break. She is struggling with her child and has found something that explains it. Whether or not she has come across the correct diagnosis, it seems to help her cope and help her child. There could be a million reasons why she hasn't had it confirmed by a professional.
I am speaking from personal experience. There was clearly something wrong with my ds from birth. He had many many medical issues and some neurological things and some learning issues. His best friend was Aspergers and the mom kept dismissing my concerns and acting like I was making stuff up to compete with her child's challenges. In the end she got so rude about it that it became impossible for the two boys to play together. She moved away and DS got sicker and sicker. Eventually when ds was 11, he was finally diagnosed with Mitochondrial Disease (and then bipolar) which explained all of what was going on. The hardest part of all of it was the minimization that all the other parents and professionals (including multiple doctors and teachers and the school etc. etc.) did to me when I was trying to figure out what was wrong with DS and how to help him. They mostly just blamed me. So please try to be supportive to your friend and not dismissive.
P.S. Me and Google figured out what was wrong with DS and then got a referral to a specialist in Mitochondrial Disease who confirmed it with genetic testing. It would have been years longer if I had waited for a doctor to figure it out.

[Gancanny]

Then let her get on with it.

If he does have ADHD and/or another condition then it'll become more apparent as he gets older, at which point she may want to seek an assessment. If he doesn't have a condition then this will also become apparent as he gets older.

[Nottherealslimshady]

Encourage her to to get a diagnosis and support for him if she thinks he has it. I definitely said I had autism before my diagnosis because I knew.
Its difficult. Some people use it as an excuse to let kids misbehave, but whether the kid has a diagnosis or not it shouldn't be used that way. But if shes focusing her parenting on the belief that he's got ADHD then that's good whether diagnosed or not, if he appears as such then the same tools should help him.

[SofiaAmes]

And it would have taken years to get the referral to the specialist if my famous scientist father hadn't intervened.....

[Gancanny]

Is ADHD, is Aspergers - can we say has? You wouldn't say "he is cancer" or "she is cerebral palsy". They are not the condition, they have a condition.

Sorry but it really annoys me. Terminology matters.

And don't get me started on SN and SEN being used interchangeably.

[GJ14]

I put conditon as didn’t want to put adhd on the question, sorry. People would be too quick to think I’m uneducated on it. I am not, I’ve been through it. It’s just the uses it for sympathy and excuses for behaviour that is annoying. My son has both. My son is a handful but I don’t use it for sympathy.

[GJ14]

Also I absolutely agree that sometimes you just know. But it went from a couple comments from teachers to self diagnosing him overnight. Am just seemed a bit ott that’s all 😀

[JanMeyer]

Is ADHD, is Aspergers - can we say has? You wouldn't say "he is cancer" or "she is cerebral palsy". They are not the condition, they have a condition.Sorry but it really annoys me. Terminology matters. And don't get me started on SN and SEN being used interchangeably.

It annoys me too, i hate seeing people say "my child is SEN/SN/ASD/ADHD." It's very reductive and a little dehumanizing. And oh god, i really wish people would understand that SN and SEN are two completely different things, right with you on that one.

but no wonder there is this judgement and these kinda views when people are self diagnosing and using it as an excuse?

Ah yes, the old it's all the fault of people labelling their kids and using it as an excuse line. How many people do you think there are that do that? Do you honestly believe that explains the ignorance and sometimes outright incompetence of the medical profession in regards to conditions like autism and ADHD? The judgement would still exist even if no-one did that ever. How would a person doing what you say explain the fact that there are idiots amongst the general public who don't believe in any kind of diagnosis like ADHD because "there was none of that when i was growing up?"
Seriously I've heard pretty much every myth by now, the old "parents do it for the DLA," it's an excuse for bad behaviour and/or poor parenting, only the "lower class kids" get diagnosed with ADHD because they're badly behaved little hooligans.... You get the picture. Assuming you really do have an autistic child and you aren't just being goady, do you not think you should be ashamed saying stuff like that? If you really have an autistic child then you should know all about what it's like to deal with ignorance and prejudice from others, yet here you are spreading even more of it.

[BrieAndChilli]

I can see both sides of this.
DS1 has ASD, well I say he has it but he doesn’t have a statement. He was under a consultant for a few years when he was younger and is still on a school action plus plan which deals with his additional needs.
But his consultant said (when he was 8 that although he will always have ASD traits and issues they weren’t severe enough to have a significant impact on his life and that he deals very well with normal every day to day so they didn’t feel the need to pursue a formal diagnosis. His other issues such as poor muscle tone, extremely late toilet training and poor fine muscles skills also had improved greatly. Now I do refer to him as ASD occasionally and we treat him as such eg giving him notice of things so he has time to process, keeping to what we say we are going to do else he will have a meltdown (eg if I say going to 3 shops but actually go to 4)

But we didn’t self diagnose although did obviously read as much as we could about ASD. The school also helped us, pushed for Ed psych evaluation which helped us get him referred to consultant and also treated him as if he had a statement. I suppose someone now would think we were over exaggerating but those that knew him when he was under 7 all know what great progress he has made.
It’s hard to know if the progress is just because of the allowances made for him and the hard work we have put in to enable him to deal with situations and if we treated him as completely NT his behaviour and coping mechanisms would unravel and his tics would come back.

[BrieAndChilli]

So sorry the point of my post was to say it isn’t always black and white and I would never judge another parent for finding thier own way to cope. However conditions like ASD and autism and a free pass to excuse al bad behaviour. It’s easy to tell tantrums and bad behaviour from a true meltdown and inability to cope.

[Nottherealslimshady]

Your son has ASD and aspergers?

[JanMeyer]

But his consultant said (when he was 8 that although he will always have ASD traits and issues they weren’t severe enough to have a significant impact on his life and that he deals very well with normal every day to day so they didn’t feel the need to pursue a formal diagnosis.

Having autistic traits doesn't make a person autistic though. If he doesn't meet the criteria for autism then he doesn't have autism. By your own admission he doesn't meet the diagnostic criteria so why would you refer to him as having ASD?

Now I do refer to him as ASD occasionally.

"As ASD?" How does one be Autism Spectrum Disorder exactly? You can be autistic, you can have autism/ASD/Aspergers. You cannot be ASD.

It’s easy to tell tantrums and bad behaviour from a true meltdown and inability to cope.

No, it's not always easy to tell. That's kind of what makes such things so challenging. And why people really shouldn't pass judgement on such things.

[Emeraldshamrock]

If she is not interested in an assessment he won't get any help or support in school based on his mother's diagnoses.
The school will make the decision to bring in an educational psychologist if it is required.

[Enchantmentz]

Yanbu to think she should seek a diagnosis through the proper channels, having adhd without an official diagnosis is no use to her son. He is just turned five so even the professionals would sit back a while to see if it is developmental before ADHD.

I would just leave her be and bite yourtongue. She isn't doing him any favours this way but maybe she will drop it after some time.

[GhostCurry]

“She has literally self diagnosed him.”

No she didn’t, she diagnosed him.

Is she the kind of person you could mention it to, OP? Or if she mentions it when it’s just the two of you, something along the lines of “oh, have you had confirmation of that now?”

[PerfectPenquins]

I knew ages 2 that my daughter was autistic. Age 9 she was diagnosed. 7 bloody years of the education system neglecting her needs. 7 years of her struggling every dam day. Yes I said she was autistic before her diagnosis because I understood her needs. I researched every spare second to try and make life easier for her. I spent years in meetings with smug school staff telling me she's fine. She's now age 10 at a special needs school and her starting level is age 5! I'm so angry and resentful how long the process is. I don't see what benefit there is for the mum at this point? Can you explain that?

You know how hard it is so try not be negative and just leave it with her, explain its for the child's benefit to be diagnosed for his own understanding.

[StillWeRise]

I think the question is, what difference is this home diagnosis making?
does it help her cope? does it give her more patience?
or has she started trying all sorts of wierd diets and theories?

[Gancanny]

The school will make the decision to bring in an educational psychologist if it is required.

They could bring in EdPsych on a consultation basis but not for an assessment, parental permission is required for that so the mother would need to consent.

[GJ14]

Thanks all! I totally get how hard it is. It took a while to get a diagnosis for DS. But the difference is that a lot of children are still having professional support despite not being diagnosed when they are in the process of it. I definitely knew DS has autism before he was diagnosed.

She has just diagnosed him herself and plasters it all over social media. I just don’t know how to feel about it that’s all when the child in question hasn’t seen a professional! It just seemed a bit quick and sudden for me.

[kerfuffling]

Take a step back and let her get on with it.

[tabernacles]

You don't know what research she's done online in the meantime. The comments from the teacher probably triggered her to look it up.

Anyone with moderate reading comprehension can read a list of the diagnostic criteria and decide whether their own child (who they know better than anyone else does) meets them or not. She is probably so enthusiastic about it because it feels like vindication, and she is relieved to have an explanation for all the challenges she has been having, even if she hasn't explained them all to you.

Many neurodiverse people are self (or parent) diagnosed, because diagnosis is difficult to access, and may lead to inappropriate intervention and parental judgement/criticism by authorities.

I am autistic and didn't get an official diagnosis till I was 34 (after 8 years of seeking one, including a private psychologist telling me I was pretending to be autistic because I could force myself to make eye contact). But I self-diagnosed at 19.

[ShSpecialFriends]

@Gancanny

Is ADHD, is Aspergers - can we say has? You wouldn't say "he is cancer" or "she is cerebral palsy". They are not the condition, they have a condition.

Sorry but it really annoys me. Terminology matters.

And don't get me started on SN and SEN being used interchangeably.

Actually Gancanny, many autistic people prefer this use of identity first language, rather than the person-first language you are suggesting. Lots of neurodiversity advocates object to their difference being equated to an illness such as cancer or cerebral palsy.
This is an interesting article which discusses this: autisticadvocacy.org/about-asan/identity-first-language/
But fundamentally research shows that autistic individuals prefer identity first language, while parents/professionals/other interested parties tend to use person first.