to be confused about friend's reaction to autism diagnosis

[ToeKneeChestNut]

NC, as this may be outing.

Friend visited today, who I haven't seen for a few years. Her DD (age 9) has recently been diagnosed with ADD, although they just refer to her as autistic. The younger DC is NT.

The visit was all about how exciting it is to have her DD diagnosed as having ADD and what a wonderful thing it is. She says that her DD will be very creative, will be a huge success in life and will make "a fortune", whereas children who are "unlucky enough to not be on the spectrum" will reach mediocrity. She said that the fact that her DD really struggles to keep up at school is "fantastic".

Her DD went through four or five pairs of knickers during the visit, as she is too distracted to remember to go to the loo. Again, this was described as part of the "adventure". I really am quoting here.

Of course I just went along with it, but the whole thing seemed excessive and even a bit manic. I'm very pleased that they have a diagnosis and I hope it help a lot. But I don't understand the feel of celebration that's come with it. I also resented the digs at academically-minded DC, but can let this go as I think my friend didn't mean to be insensitive.

So, AIBU to be confused? Or is this genuinely a wonderful thing and I don't appreciate the implications of having ADD?

There IS a strong argument that ADD / ADHD are Autistic Spectrum Conditions

Agreed, SPD, dyspraxia, dyslexia and how many more co-morbids too? However currently no professional in the UK who has dxd ADD/ADHD would say a child with only that condition is on the autistic spectrum.

It's possible it was referred to in general terms at dx and because the mother is so new to all the behaviours suddenly having a reason and not used to all the terminology, she's got the wrong end of the stick. It's also possible her child has been dxd as having ASD and ADD.

I'd guess she's used to hearing so much prejudice and derogatory comments about her child's behaviour to date, you all know the sort of thing, made up dx for spoilt kids, needs a good slap, I wouldn't let my child get away with that, kid needs to behave, put consequences into place, useless parenting etc.etc. so she's started on a very positive note telling people not only the dx but all of the positives that go with it.

The diagnostic process can be very long and the tests focus on the negatives, the deficits, which can be awful for a parent to read, endless pages of s/he cannot do, particularly when it's compared to their peers. Processing that negative information is hard for a parent and no-one wants to broadcast that. That's why IMO she's putting a jolly positive spin on the traits she's describing when she's talking about the dx.

ok i am cynical! it's just that i know someone... she tried to get a diagnosis for her son but was 'unsuccessful'. she would have revelled in it.. anytime they are ill in anyway.. it's all over FB. it seems to make her feel special if there is something wrong with DC. it's not a cold it's a trip to A&E and so on. she wants the attention/the "you ok hun"s.

I think @anchor9 is having a little chat with herself.

Agreed, SPD, dyspraxia, dyslexia and how many more co-morbids too?

Eating disorders are also being considered.

She is in denial.

Speaking as someone with the kind of disability most people would abort a baby for, and who has a child with a completely different but also life-changing condition -

it can be bloody annoying to have everyone expect you to be devastated, and to want to be compassionate all the time. It seems to me that people only want to pity me or to take offence at me (for not having the reactions/behaviour they think is appropriate for someone with a severe disability). I'd like it if they just saw me as I see myself - someone who gets on with things despite the difficulties.

Your friend sounds a bit self-absorbed, but I can empathise with her - I also get a bit over-the-top-positivity-freak in reaction to the bloody annoying doom and gloom or criticism all around me. I also have sudden crashes when I feel massively depressed. Neither is created by my disability per se, it's always in reaction to how other people treat me.

Everything sleeponeday said. And if she were most people I'd say the grieving/learning process even after an expected diagnosis takes two years minimum to get to a bearable level. She sounds confused about what her child actually has and like she is in terror of anything she can't boast about happening in her life. She's going to have a hard adjustment. I'd bear in mind that to have a kid with an ASD, ADD, ADHD, dyslexia, dyspraxia, dyscalcula - did I miss anything - there's a good chance you have at least some of the 2000-3000 genes of the phenotype yourself. I'd be horrified by her reaction too but I bet she's in a different place when she's not in so much shock. I suspect the best way to support her is to let her come down to land at her own daft pace and try not to worry about how this will affect her daughter for the moment. She will take in the bad bits little by little. If anyone tries to put her straight right now she will dig herself into a corner. If she's still in this place in a year's time (and if you can still stomach her), maybe reassess.

Can anyone tell me what NT is? The OP said her other child is NT?

Neurotypical

I don't agree with people who say she is shocked and putting a brave face on it. I think she sounds as though she is one of the people that equates autism with savantism - which most people with autism do not have.
I have met parents like this over the years. One boy on ds's class had autistic traits and finally they agreed to an assessment and he got his diagnosis. They then tried enrolling him in music classes, dance classes, drama classes, language classes to "discover" his talent. It was quite sad if I'm honest though things seem to have settled now.
There is a big trend in the States to celebrate autism and to feel "sorry" for neurotypical children who can't experience the wonder of the creativity of autism. It has definitely come across to the UK as well though less so (at the moment). I find it quite sad. I wish it was ok for us all to celebrate our own children without having to put anyone else's down...

It seems really odd that she would be going to such great lengths to convince you that the diagnosis is good news unless you have said something to indicate you thought it was a bad thing?

it can be bloody annoying to have everyone expect you to be devastated
^^Yes this!!

It's very clear from this thread that most people think that a diagnosis of ASD or similar must be devastating and anyone not sobbing and wailing is hiding how they feel, faking it and deluding themselves.

Not everyone thinks that way. Some people accept the diagnosis and embrace their child the way they are, looking for the best ways of managing the challenges and giving them the best opportunities to achieve the best they can. You can do that without thinking that they are a savant.

It's very clear from this thread that most people think that a diagnosis of ASD or similar must be devastating and anyone not sobbing and wailing is hiding how they feel, faking it and deluding themselves.

It's a good point.

But the detail about ramping up the positive rhetoric about "an adventure" in response to multiple toilet accidents did suggest a level of defiance to me. Not even the most ardent autism-positive activist characterises toileting issues as an adventure.

It's very clear from this thread that most people think that a diagnosis of ASD or similar must be devastating and anyone not sobbing and wailing is hiding how they feel, faking it and deluding themselves.

It isn't necessarily devastating but it does mean coming to terms with a different future for you and your child. That takes some processing and it has stages that are similar to grieving.

My DD1's diagnosis was out of the blue for me but DD2's was something I was actively pushing for. They both rocked me emotionally in different ways. It's a huge life event and parents need time and support to manage it.

I was overjoyed when DD got diagnosed. I'd had 15 years of unsupported nightmare with everyone, including professionals, telling me it was all because I was a shit parent. We moved abroad and the professionals here immediately suspected autism. I wanted to swing from the chandeliers when it was eventually confirmed (and I wanted to go hit all those who'd rubbished my parenting with the diagnosis report in which the consultant said it was a testament to my brilliant parenting that DD was doing so well despite her condition and the total lack of support we'd received to date.)

I was relieved when ds was diagnosed, and thought it meant we would be able to access support
It's now, 2 years later, that I'm struggling with it all, and doubting my ability to parent two boys with ASD/PDA.
If people go down the pity route with me though, I tend to overdo the positivity stuff and probably sound deluded. If I admitted how hard I was finding things I'd probably break down and never get back up again.

People have different mental approaches to life and its challenges - and this is affected by what they've experienced.

One of my DC was diagnosed with something which causes many parents to go through a grieving process. My reaction was entirely different - as someone with an untreatable condition myself, I was not at all fazed by DC's completely manageable - though lifelong - condition.

I see it in very positive terms, including the fact that DC will have to have a much more healthy lifestyle as a result, to manage the condition. To other people, I might sound a bit over-the-top - it leads them to point out as many negatives as they can. The result is that I get more OTT batting away these unwanted comments ...

I think there's a difference between the point at which you realise something is different about your child, and that they are struggling with the standard expectations, and the moment you get the diagnosis. After years quite often of dealing with the former, the latter can be a huge relief.

Sadly, as many of us have learned the hard way, getting the support the diagnosis supposedly entitles the child to is easier said than done. Especially in the current economic climate.

My partner (at 39) has just been diagnosed as being on the Autistic Spectrum. There are so many reactions to getting confirmation - shock, anger, grief, denial.....I would ask to see your friend on her own; mention that she has had some life-changing news and ask her how she is really doing.

Autism and ADD are not the same and I think there is a question her of 'labelling' a child and whether that is entirely correct.

Truth is; even if you secretly know that your child has the characteristics of ADD/ASD; it is quite different for someone else to tell you they have it.

And unfortunately we live in a world were there is much stigmatism around neurological conditions and I am sure that the bravado about life chances is her way of testing reactions to what is possible. Any parent with a child with these challenges has to do a certain amount of campaigning for opportunities and support.

Diagnoses are often a mixed bag of feelings - which may explain why she came over as 'manic' (in your words). I feel for her situation.

She is going to need clean and honest support from as many people as she can.

ADD is not autism. It's attention deficit disorder - so ADHD without hyperactivity.

It's clearly a way for her to make herself feel better as the reality is a child who can't focus on an activity hence the constant wetting.

I'd just allow her to say what she is but would ask questions like "so you don't think her sibling will achieve anything because he's nt? How does he feel about you thinking that?"

I have a child with autism - some aspects do make him able to achieve some things better than his peers - but the reality is every day is a struggle and without me supporting him through everything he wouldn't achieve the things he is.

Just re read my post and realise I've sounded all negative!
What I'm saying is allow her to realise she can moan about how shit it is at times as well as everyone does about parenting - SN or not.