Does autism worsen?

[Tom75]

Can’t believe I almost finished typing this and the page refreshed and wiped it all. Here I go again.

i could really do with some advice/info.

my 13 year old daughter was only recently diagnosed with autism following a screening for what we mistakenly thought was adhd.

as a small child she had occasional meltdowns and at times would attack her siblings, but generally she was quite happy go lucky and very energetic, also very fidgety (hence our adhd suspicions).

things started getting worse while we waited 2.5 years for the adhd assessment (we live in the uk) and she started to develop ocd and torrets (facial and vocal tics) as well as more frequent meltdowns.

these days things are becoming unbearable and getting worse. Everything needs to be done exactly how and when she says or she will have a full on meltdown. Shes now taken to smacking her own head as she builds into a complete and total meltdown. She spends her entire time after school and the weekend in her pajamas binging on certain series and has claimed half the sofa for a bed that she made up out of the cushions and some blankets. No one can move them and no one else gets a say on the tv. So we barely even see our other children these days.

she ruins pretty much every single thing we try to do from days out to simply watching a film as a family, no matter how hard we try to keep things happy.

I think I could take this more if she’d always been like this, but she wasn’t. She had her problems but nothing like this.

what I need to know really is:

is this a common issue with girls of this age that are on the spectrum?

will this likely continue to worsen?

is it possible this could get better once shes through puberty?

will this get even worse once she starts her periods?

we are trying to get whatever help is available, but here in the uk that help is scarce.

thanks

tom

Just to add to this, I get shouted at through every meal for scratching my plate. I mean the tiniest little noise. To the point where most meals i eat on my own in the living room away from her. Again, this never used to be an issue.

Some find the wheels come off as DC get older because the demands (academic, social, communication, emotional, behavioural…) increase.

Has DD had a sensory OT assessment?

Will she use noise cancelling headphones/earphones or ear defenders? Have a look at misophonia.

What support for anxiety is DD receiving?

When you say you are trying to get help, what help are you pursuing and which country within the UK are you in?

Look into PANS/PANDAS especially with children already on the spectrum. The ocd and tics are 2 major signs along with the meltdowns x

That sounds incredibly hard, especially when things feel so different from when she was younger. It may be worth looking at sensory OT input, anxiety support, and autism screening resources like Autism Detect, just to better understand patterns before speaking to professionals. Hopefully, the school and GP can help point you toward the right assessment and support options.

My wife has contacted everyone that our gp referred her to. Most were of no use, others deemed her not severe enough for help.

she did attend a group for kids with torrets lead by a child psychologist who has now agreed to see her for other issues that she’s having has. She has been helpful, but so far the only one really

I will
look into this, thanks

It really is incredibly difficult. We really feel like we’re losing the battle here. And as she gets bigger she’s becoming more threatening towards my wife.

my hope was that when her hormones settle down she’d calm down a bit. But thats just hoping at this stage.

dont get me wrong, shes a lovely, intelligent, caring kid. But if things aren’t going to plan (I mean to the exact tiniest detail), her ocd challenges gets interrupted, shes tired and I scratch my plait too many times, she feels shes not being listened too or she has to wait for her turn to speak then all hell breaks lose. I find my home to be the most stressful place to be in the world. Baring in mind Ive been an emergency services worker for over 20 years now. Nothing else comes close to being as stressful as this

just to add, she goes ear defenders which she doesn’t like and ear plugs which she won’t wear. She’d rather just scream at me for every little noise i make. It’s actually had quite an affect on me as I now wince every time I even slightly scratch my plait now, even when I’m not at home. Just eating at work and I’ll wince.

My wife has contacted everyone that our gp referred her to. Most were of no use, others deemed her not severe enough for help.

But who did the GP refer to? It is difficult to suggest other avenues of support &/or how to challenge services who have refused support/are dragging their heels if you don’t say who you have already been referred to and who you are trying to get help from.

It might help you to read about sensory processing disorder. It really isn’t that DD would rather just scream at you.

To be honest, I can’t remember which departments and organisations we’ve seen/been referred to. It’s been going on for years. In that time we’ve been bounced around everywhere. My wife’s better at remembering all this stuff than me, I just know weve contacted a lot of people. I know we waited 2.5 years for the adhd assessment only to be told we blew have at least 5 year wait for an autism assessment. So we had to borrow £3000 to Se a private assessor. My main question was regarding if it’s normal for these things to get a lot worse at this age and does it get better as they get through puberty. Or is this it?

No-one can tell you if it will improve or not. For some, it does. For others, it doesn’t. Things are more likely to improve if DD receives the right support. With that in mind, it will help you to investigate who has been approached for support so far.

Ok, I’ll ask my wife if she can sit down with me one evening and compile the extensive list of all the people, departments and organisations we have been referred to over the years and get back to you. Thanks