To not believe that my daughter is autistic?

[lionsandtigers21]

I know that may sound bad, but my dd17 seems utterly convinced that she has autism and ADHD and I just don’t buy it. She wasn’t always an easy child, but I don’t remember her having significant sensory issues or huge trouble with socialising. Now she’s a teenager, I think she may be depressed because she self-isolates so much but I think that’s the crux of it. She changed schools a lot as a child and I’ve also had issues in the past, so I accept that that may have caused problems. But I really can’t see how she would fit onto the autism spectrum. Her main argument is that, as a little girl, she would frequently go off on her own to collect stones (her special interest) and talk to herself instead of socialising or playing with toys, but she did definitely also have friends at that age. What she seems to remember as meltdowns seemed to me more like tantrums, and would normally occur if she was taken somewhere she didn’t want to go, although she did have unexplained tantrums as well (usually saying that she wanted to go home when she was already in the house and wanted to go back to being a baby) and I remember that she would cry dramatically as soon as I picked her up from school and all the way home at a certain period. She also told me that she would do things in class that would definitely been deemed socially inappropriate, liking uninhibitedly touching her private area in front of everyone until relatively late on in primary school and ignore the teacher who told her it was inappropriate, but I think a lot of kids are uninhibited? Things that might be considered ‘stimming’ she has always done to an extreme (she once scratched her face so much that I was convinced she had scabies!), but she could definitely make friends at school if she wanted to, even if she liked to be alone sometimes. Sensory-wise, I can’t really remember any issues aside from her hating me resting my head on her shoulder and putting my chin on her head, she also found things like nail filing very uncomfortable to witness. She insists that she struggles with social cues/situations today and engages in ‘masking’ behaviours where she unconsciously finds herself copying the speech and body language of those around her, but don’t we all do that? No one is the exact person at home and at school. She’s done things before that would suggest she’s a bit clueless, like exposing a lie that I told to my parents in a very excruciating situation (which I blamed her for at the time). There’s also more stuff that I could list, but does any of this override her apparent social competence as a child? I think the issues she has today are a result of lack of experience and isolating herself in a dark room rather than autism/ADHD? I don’t know, maybe I’m being facetious. Has anyone experienced this?
Thank you :)

Ok. OP late diagnosed ASD ADHD lady here. It doesn’t matter if you ‘believe it’ accept that she might be and try to make things easier. I masked for years and did all the echolia, etc it’s just with spectrum, all the things you said, though you ‘may all do those things’… with AS the intensity in which these things are felt, processed and executed are so intense and requires more effort than an NT; meltdowns are not tantrums, it is a neurological state which is complex and tiring, its not to be trivialised. Please try and understand. My mother tried to dismiss it and it made my diagnosis harder as I felt unacceptable. Please support her xxxxx

Rudderneck

How much do you mask if you think it is normal
When you go into a room with other people do you have to think about keeping yourself under control so you don’t draw attention to yourself and want to look normal.
How many times do you look at other people and wonder how they can do stuff like keeping their house clean, getting to appointments on time, being able to fill in forms and get them back in time.

How many times do you consciously look at others and watch what they do and try to do the same to fit in

Everyone might mask occasionally but what about those who mask all the time

I doubt you will ever know what that feels like. It is exhausting.

With something like Adhd, taking the meds would soon expose if you have or haven’t got ADHD

My son was diagnosed with autism over 20 years ago just before his third birthday. At that time we were told autism was a social and communication disorder and in order for a diagnosis of autism to be given there needed to be severe deficits in both areas. The assessment was very thorough. At 18 months old there were several visits (with long waits between) to a consultant paediatrician and a SALT. There were blood tests and hearing tests. Then when he was 2 1/2 a 12 week assessment took place. He was observed for 2 hours a week in a play setting by a team of health care professionals. There were about 5 children there. At the end of 12 weeks a multi disciplinary team meeting took place where everyone involved had to agree on a diagnosis. At that time the figures were 1 in 10,000 children diagnosed. Everything has changed now though. I know people with a diagnosis of autism that are very social and have no communication difficulties . I know wait lists are still very long. In your situation you need to support her if she wants to get assessed. Then you’ll both know for certain.

My son's diagnosis process ran exactly the same way when he was 3. He is 7 now.
My daughter was 14 when she was finally assessed and ran a little differently but still had to fit the same boxes

I hate this attitude! I initially self-diagnosed in my 40s, when one of my children was being assessed, way before my formal assessment (because there was a long wait.... ) but I now have a formal diagnosis of ASD and likely ADHD, but the ADHD (which I know I have, and in fact I relate to more than the autism) would need another assessment, which I just truly don't have the capacity for).

Half my cousins are autistic and many of the older generation in my family so clearly are but are undiagnosed. Lack of recognition/diagnosis killed my dad, and I'm not being in the least bit dramatic there. If only it had been recognised then.

Self diagnosis initially truly doesn't mean having a few trendy quirks and liking the sound of a label. I have spent a lifetime beating myself in the head, biting myself, banging my head off walls, feeing suicidal. Being labelled, by my own family as every negative word going apart from my actual diagnosis. Being laughed at, mocked, disbelieved. Yet I was the perfect high-achiever at school and I'm sure my teachers would never have believed my mum in a million years.

Fuck anyone who thinks it has to be obvious, that we don't mask, or that anyone diagnosed as an adult just wants a nice label. Maybe we just want to understand why our parents died so young, and desperately want to avoid going the same way!

To clarify, the "I hate this" was not directed at the OP. I was attempting to reply to someone (have forgotten who!) who mentioned self diagnosis as a fad or a trend... in fact there have been a few posts along these lines and I don't know whether any of you truly realise how many autistic women have been fobbed off / dismissed for decades......?! How we have battled self-harm, dropped or failed uni courses, divorce, relationships falling apart and fuck knows what else. Again, anyone who truly thinks it is a trendy quirk truly has no fucking idea!

I have also never heard of the ADI-R being used alone to diagnose a child (in reponse to a previous poster) and can't see how this could be acceptable for NHS records, etc, even if initially done privately. Are you SURE this happened?! For my child to be diagnosed we needed input from ourselves plus the school, and then the ADOS test where his communication skills were assessed by a clinical psychologist and a speech therapist against set criteria. For my diagnosis, my husband had to submit a highly detailed questionnaire (maybe my parents could have done this, have they not both died young due to neurodivergent-related causes!) I have no idea how anyone thinks it could be faked, or a diagnosis could be given on the say-so of the parents!

I also want to clarify that on the surface I "have no communication difficulties". Until you live with me, and realise how much I do. Ask my colleagues and then ask my husband. My colleague will tell you I am mega social (fair enough, they only see me out when pissed). My husband will give a massively different picture. Ask my husband how often I take things so literally it causes arguments, and how often I misinterpret facial expressions. Autism is so misunderstood...how dare anyone tell me I don't have difficulties with something when every fibre of my being is working to make me seem "normal". Being dismissed as seeking a label, while masking just to try and cope, is really a massive punch in the guts (metaphorically). I am not/we are not making it up!

OP I am truly very sorry to distract from your thread. It probably shouldn't be an excuse but with autism and likely ADHD things do just come out as rambles/rants! For what it's worth, maybe if (you and) your daughter were assessed it might well help explain a few things...... understanding is a good thing!

Ria Lina and Darryl Morris had an interesting chat last night on Times Radio.

They were actually discussing Russell Brand but it went off on a convo about autism and adhd.

It was really interesting and lovely to hear two people with lived experience chatting so openly on the radio.

CosmoFluff If you think you have any symptoms that are ADHD related, at least put yourself on the waiting list for an assessment.
With ADHD there are meds that do help with the symptoms.
Its thought that as people are getting assessed and taking meds for their ADHD, for some, they find that certain symptoms that are left point to autism or other ND/mental health related issues that were being covered/masked by the ADHD

Often it’s not very obvious with girls j til later on. My daughter was just starting secondary when her world didn’t make sense anymore and looking back k can clearly see the signs from back then too but she functioned just fine at the time.

I agree with that @KajsaKavat. I breezed through primary school, even though I had a lot of sensory issues that my mum didn’t
realise were something else.
As soon as I started high school the wheels came off, I felt completely out of my depth.

It’s so sad and quite common from what I understand. Sorry to hear that

OP you sound like my mother who dismissed everything I ever experienced or did as just having a tantrum and being naughty. I was diagnosed and that didn't even convince her. Some parents just stay in denial unfortunately. My mother would deny the sky is blue if it meant she could look good to others.

Why invalidate what your daughter is saying? She's almost an adult and can go for assessment herself. I suggest you stop not believing her for a start and support her.