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?

My DS is autistic and hates when people say "he is ASD", he usually replies with "I'm not autism, I have autism" or "I'm not autism, I am autistic". I take my cues from him.

Woman i know has a son who is 16 now. I have known her since he was about 6 and she has always said he has autism. He does have autistic traits. She was telling me recently how things will be hard for him at college if he goes, as he has no actual diagnoses for autism so would not get extra help! Mad.

Which is fine, and sensible, but not necessarily applicable to everyone else!

She still got DLA for him throughout childhood (yes I know you do not need any diagnosis for DLA).

If she is not interested in an assessment he won't get any help or support in school based on his mother's diagnoses

And you think with a diagnosis you get help and support.

Ds was diagnosed at 16.

We might as well have not bothered.

We knew he has ADHD. He just received a piece of paper which confirmed what we knew.

I have known her since he was about 6 and she has always said he has autism. He does have autistic traits. She was telling me recently how things will be hard for him at college if he goes, as he has no actual diagnoses for autism so would not get extra help! Mad.

There are thresholds for diagnosis and unfortunately some people do slip through the gaps. Lack of diagnosis doesn't always mean that the person does not have autism or that they don't need some sort of support. Your friend should consider asking for a second opinion or repeat assessment.

She still got DLA for him throughout childhood (yes I know you do not need any diagnosis for DLA).

You do need evidence though that the child needs more care/support than a typical child of their age so presumably she had this.

fundamentally research shows that autistic individuals prefer identity first language, while parents/professionals/other interested parties tend to use person first.

It's an interesting article and definitely something to think on.

It's taken over 2 years for my friend to see a specialist. All of the teachers at her son's school agree he has ADHD and are working with him on that basis but he can't access certain help due to no official diagnosis. It is heartbreaking really as he is a really bright kid but struggles with friend groups because the parents don't know/understand and until she gets a diagnosis my friend refuses to even mention it, in case she is seen as "faking it". It's not a kind thing to accuse someone of, especially when diagnosis' are so hard to come by.

DD has mild dyslexia and one mum in our year actually demanded to see her diagnosis because her son had autism and she "couldn't see any issues" with my dd She clearly didn't believe that dd had a diagnosis and I lost all respect for her at that point. It's not a sodding competition.

All these people saying to let her get on with it, are not thinking about the child.

If she's telling people in front of him, that he has ADHD, taking about it all the time, plastering it all over social media, she is messing with his sense of himself. She is telling him he is different. That he has a condition that he might very well not have.

This is hugely damaging to him psychologically. She's telling him that there are things he can't do, that maybe he can. She's telling him not to expect much of himself. That he's not like other children. And this might all not be the case.

He's not a baby. He's old enough to understand some of what she's saying.
This is not just about her. It's about him. And this is extremely dangerous for his mental health.

My Ds is about to get an Asd diagnosis - the assements are done- Camhs nurse has spoken to consultant. I would not have chased a diagnosis, ( already has an ADHD diagnosis)he masks so much that it doesn’t slip often except at home.

So there is much to this boy you don’t see , school aren’t concerned or interested in my Ds’s struggles as he generally only causes minor disruption.

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.

It's the grammar that's the issue, you can say a person is autistic, you cannot say a person "is ASD." That's what me and Gancanny have been pointing out. And yes, some autistic people do think it's a "difference." Meanwhile there are other autistic people like myself who don't see it that way, and see it very much for the disability it is. Cerebral palsy is no more an illness than autism is by the way. It's a physical disability that is actually categorized as a developmental disorder.
Though Gancanny wasn't comparing autism to cerebral palsy, she was merely pointing out that you wouldn't say a person is ASD anymore than you would say they are cerebral palsy.
A person with autism IS autistic. They HAVE autism.
Identity first language means not saying person with autism. Because it makes the autism sound like it's something seperate from the person.
It doesn't mean it's acceptable to refer to someone as an "ASD child" or say "my friend is Aspergers." That's pretty much the opposite of identity first language.

You can HAVE autism/SEN/ASD/ADHD. You can not BE ASD. See the difference?
As a person who has Aspergers I can tell you not once have i ever said I am Aspergers. That's not identity first language, it's offensive and dehumanizing. Identity first language doesn't mean we want people to literally say we are whatever condition we have, what a peculiar thing to think.

It's not top trumps or a competition. You have your child. she has hers. If you don't like her behaviour then just back off the friendship and let her get on with it. Not all kids on the spectrum need a diagnosis anyway, they are able to continue at school without adjustments but patents have to learn different coping tactics at home. If you think she's doing it for attention then don't give her any.

Ha. Was just about to type ‘hoist by one’s own petard’ but JanMeyer got there first. CP is not an illness.
I did dx before her consultant though. It took him two years of teeth sucking and trying to avoid the medical negligence claim.

@CeeceeBloomingdale

It's not top trumps or a competition. You have your child. she has hers. If you don't like her behaviour then just back off the friendship and let her get on with it. Not all kids on the spectrum need a diagnosis anyway, they are able to continue at school without adjustments but patents have to learn different coping tactics at home. If you think she's doing it for attention then don't give her any.

I think that most kids on the spectrum need some adjustments to reach their potential school. Even kids with ND traits often need some adjustments. I've always spoken to DCs teachers and said that he doesn't have a diagnosis, we're not pushing for one but the management strategies that work best for him are those targeted for kids with ADHD in terms of motivation, organisation, distraction etc. He is definitely neurodiverse but probably can't put enough ticks in the right boxes to get any kind of diagnosis. Having a feel for where to start supporting him is really helpful.

Sorry to ask this, but could someone please explain the difference between SN and SEN.

SN = special needs, also known as additional needs, and generally means the child has a disability or long term condition or illness that could be considered a disability.

SEN = special education needs. This means an individual child has more difficulty in learning than other children and requires individualised support and adjustment in order to reach their potential. This difficulty in learning is not necessarily due to a disability, condition, or illness.

Some children will have both SN and SEN while others will only have one or the other.

@GJ14
I know someone who has self-diagnosed her son with adhd & asd. He is 11, and ironically been through ados panel 3 times and not been given a dx of either. He is 'spirited' and I don't think I've ever heard mum tell him no ...she tells everyone who will listen he is bullied, and the last few years social media has been full of SN child/asd stuff, now talk of suing the panel who refuse to dx her child 🙈
...but of course he is adhd/asd and she knows best. Very few people respond now, its strange reading after 7+ years.

Step back and dont let it bother you.

It depends how the diagnosis was carried out.

We were referred to Camhs for a talk to see if it was possible that Ds had ADHD.

Ds and I got in the lift to the floor we needed to be. I held onto ds’s hand otherwise he couldn’t have resisted the urge to press all the lift buttons(must admit it took all my strength not to press all the lift buttons).

The lift doors weren’t even opened fully when the doctor said he didn’t have ADHD.

I wonder if this is the type of diagnosis she got.

Ds was then years later at college and they said he needed to be tested for dyslexia and possible ADHD.
He got his diagnosis through college. But then he left and although he obviously still has ADHD there isn’t any support.
As I probably have it too I don’t have the insight to know how to help him when I am struggling myself with certain things