Autism Acceptance Week March 27th - April 2nd.

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GodIsADeeJay81
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Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 6:18 pm

3-4yrs ago, my ex and myself started a life changing journey with our daughter, which resulted in her being diagnosed 2yrs ago with Autistic spectrum disorder/ASD/Aspergers when she was 5-6
(Name was changed from Asperger's due to Nazi connection)

Shortly after this, after noticing that I shared a lot of traits/behaviours with her, I took myself down to the doctors and started my own journey which resulted in me being diagnosed last year with ASD, at the age of 41.

Suddenly my life made a lot more sense, it all clicked into place and I can say I'm better for having the diagnosis.
I wanted to know because ASD is hereditary for 85% of those with it and I didn't want my daughter to grow up with no one to talk to about it.
It doesn't stop me working, or living my life as I normally would, just helps explain why I'm doing something, or behaving, a certain way.

I suspect my 19yr old lad has it but he's not fussed just yet about getting checked

There are some shows worth watching on BBC iPlayer if you want to know more about it -

Paddy and Christine McGuinness: Our Family and Autism: www.bbc.co.uk/iplayer/episode/m00122vl via @bbciplayer

Christine McGuinness: Unmasking My Autism: www.bbc.co.uk/iplayer/episode/m001k31t via @bbciplayer

She's done her own show because females are less likely to get put forward for checks because of a common held misconception that females can't have it.

Inside Our Autistic Minds, Series 1: Episode 1: www.bbc.co.uk/iplayer/episode/p0bbnjvx via @bbciplayer

These two episodes by Chris Packham are both very good and challenge some more misconceptions.
Chris has ASD and Ken Bruce's son is a non-verbal Autistic person.

Everyone's favourite Irish footballer James McCLean has spoken about his own diagnosis, after doing what I did when his own daughter was diagnosed (please don't use this as an opportunity to attack him over the other stuff)
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Caernarfon_Claret » Tue Mar 28, 2023 6:28 pm

Yes. Got my ASD diagnosis last August (aged 46) - my ADHD diagnosis was in August 2019.

I've been masking for so long it made the diagnosis a lot harder.

Also watched the Chris Packham series.

Part of the seeking diagnosis was the shut downs/ meltdowns I was experiencing over doing both bathroom and kitchen renovation in the last 12 months - a very real concern one of these days I'll shutdown completely and become non verbal.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Longsider » Tue Mar 28, 2023 7:07 pm

I much prefer the new acronym ASC . The c being for condition, rather than the d for disorder.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 7:19 pm

Caernarfon_Claret wrote:
Tue Mar 28, 2023 6:28 pm
Yes. Got my ASD diagnosis last August (aged 46) - my ADHD diagnosis was in August 2019.

I've been masking for so long it made the diagnosis a lot harder.

Also watched the Chris Packham series.

Part of the seeking diagnosis was the shut downs/ meltdowns I was experiencing over doing both bathroom and kitchen renovation in the last 12 months - a very real concern one of these days I'll shutdown completely and become non verbal.
I was advised to get an ADHD assessment, I've got the paperwork, at some point I'll remember to hand it in to the docs :roll:

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 7:20 pm

Longsider wrote:
Tue Mar 28, 2023 7:07 pm
I much prefer the new acronym ASC . The c being for condition, rather than the d for disorder.
They're interchangeable pretty much, my daughter's is one, I'm the other

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 7:26 pm

I was diagnosed with ADHD in 2020. I had problems when I was a kid but ADHD wasn't a thing then and it was put down to e numbers if i recall rightly. I'm 45 now and it's been a struggle most my life. I'm pretty sure my 6 year old daughter has it, I see how she acts, deals with stuff and even how she speaks and it's just like me. But because she doesn't act up in school she can't be diagnosed. I never really acted up at school either. It's harder to get a diagnosis for girls. They bottle it up and then as soon as school is finished boom they're off. But acting up in school is part of the criteria. It's silly.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by elwaclaret » Tue Mar 28, 2023 7:45 pm

Caernarfon_Claret wrote:
Tue Mar 28, 2023 6:28 pm
Yes. Got my ASD diagnosis last August (aged 46) - my ADHD diagnosis was in August 2019.

I've been masking for so long it made the diagnosis a lot harder.

Also watched the Chris Packham series.

Part of the seeking diagnosis was the shut downs/ meltdowns I was experiencing over doing both bathroom and kitchen renovation in the last 12 months - a very real concern one of these days I'll shutdown completely and become non verbal.
Just had my confirmation last week. ASD (defiantly one, more being tested for), Dyslexia and probable ADHD. 52 now, been told all my life ‘I would be ‘top of the class if I applied myself’. Now halfway through my Masters after discovering my problem after my degree…. My PhD will hopefully be a walk in the park once I get advice!

Lot of it about, the poster that says when you’ve gone so long accepted what your told its quite an earthquake to your world when the reality is revealed… and you start recognising your symptoms in things that you always thought every else did.

Disorganisation and obsession hand in hand. Not being able to stop at ‘doing enough’ and having to know all the ins and outs of a subject before you feel comfortable… leads lecturers both frustrated (essay writing) and astonished at the depth of my learning once I’ve studied it… but not one of them had me down for dyslexia, never mind autism. Good you’ve found it early.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Steeton claret » Tue Mar 28, 2023 7:46 pm

My 4 and a half year old was diagnosed with ASD 6 weeks ago . It took about 2 years for diagnosis but at least now I know I can try help him more and try understand more what’s going on in his head. Definetley see quite a few things what he does what I do although I’ve never been assessed for it I wouldn’t be surprised if I have it too.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 7:49 pm

Steeton claret wrote:
Tue Mar 28, 2023 7:46 pm
My 4 and a half year old was diagnosed with ASD 6 weeks ago . It took about 2 years for diagnosis but at least now I know I can try help him more and try understand more what’s going on in his head. Definetley see quite a few things what he does what I do although I’ve never been assessed for it I wouldn’t be surprised if I have it too.
It quite possibly comes from either you or your spouse, it's worth doing one of the free tests online to see how you score.

This is the test you ultimately end up doing as part of an assessment
https://embrace-autism.com/raads-r/#Wha ... cores_mean

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Tribesmen » Tue Mar 28, 2023 8:43 pm

James McClean is some man , massive to come out and tell the world . 100% behind him .
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Bordeauxclaret » Tue Mar 28, 2023 9:20 pm

Steeton claret wrote:
Tue Mar 28, 2023 7:46 pm
My 4 and a half year old was diagnosed with ASD 6 weeks ago . It took about 2 years for diagnosis but at least now I know I can try help him more and try understand more what’s going on in his head. Definetley see quite a few things what he does what I do although I’ve never been assessed for it I wouldn’t be surprised if I have it too.
What sort of things led to the diagnosis? If you don’t mind me asking.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Rick_Muller » Tue Mar 28, 2023 9:30 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 7:49 pm
It quite possibly comes from either you or your spouse, it's worth doing one of the free tests online to see how you score.

This is the test you ultimately end up doing as part of an assessment
https://embrace-autism.com/raads-r/#Wha ... cores_mean
Thanks for the link Sid… so I scored 164, which does indicate it’s likely I’m on the spectrum. I suppose the question is - what to do next to get a formal diagnosis?

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 9:37 pm

Rick_Muller wrote:
Tue Mar 28, 2023 9:30 pm
Thanks for the link Sid… so I scored 164, which does indicate it’s likely I’m on the spectrum. I suppose the question is - what to do next to get a formal diagnosis?
Speak to the doctors.
If you have a diagnosed family member, that tends to help, it did with me, but still talk with them anyway even if you haven't.

My doctor asked me why did I want to get checked and I was honest, I wanted to know to help my daughter with it but ultimately it wasn't going to change my life hugely because I was still going to live the same way

I scored 190 ish I think
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 9:52 pm

Bordeauxclaret wrote:
Tue Mar 28, 2023 9:20 pm
What sort of things led to the diagnosis? If you don’t mind me asking.
My daughter had what's called meltdowns, which is basically what some people would call a tantrum, but more intense, we get overloaded and it all just bursts out in whatever form we use, which can be rage/distress, physical/emotional.
I've sat on the floor in my local Sainsburys whilst she's had one and had to wait 20mins for her to calm down, another time she's physically attacked me.

A change in routine makes them agitated.
We'd have to tell her 3 times or more when we had something planned so she could adjust to the fact it was happening and we'd have to start telling her well in advance, days/weeks/months depending on what it is.
If you told her she's doing something, like an activity, then it had to happen as a meltdown could happen she'd prepared herself for that activity and built up to it.
If she has a meltdown, she's usually knackered afterwards, needs to wind down/sleep.
I'm the same if I have an intense outburst and it puts me out of sorts for days, plus I don't remember what happens during said outburst and I've done some stupid things during them.

Loud noises - some were unbearable for her, like fireworks, or a lorry next to us if her car window is open, or a loud motorbike.
She'd have to cover her ears, sometimes she'd scream.
I got her the ear defenders.
Music isn't an issue though, she has that loud as she wants.

Intelligence - a person with ASD is high functioning, so smarter than average, can be good with numbers but crap with important dates (I have a reminder set on my phone's calender for the anniversary of my dad's death or I'd forget), but we lack many social skills.


I've learnt to not tell her if I'd arranged for her to see my sister, because my sister is very bad at letting us down and the fall out with my daughter isn't worth it.


A lack of emotion over things, I didn't cry when my parents died and I was stood there when they turned my dad's life support off.

A hyperfocus on a particular subject of interest, for me it's usually cars l

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Bordeauxclaret » Tue Mar 28, 2023 10:07 pm

Thanks for posting that. Very informative.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:14 pm

There is other stuff, but everyone of us is different to the other, sometimes a lot, sometimes a little.

As an adult I've suffered burnouts a lot, whether its work or friendships
These days my close friends are very few and they're low maintenance, they don't expect much from me & vice versa, they don't need to see much of me but we'll talk everyday via WhatsApp or social media and it works really well.

One of my closest friends I've only seen twice physically since the season we reached Europe, but we chat every single day 😂.

I love my own company, I can spend all day by myself and I'm quite happy with that, I don't need to be around a group of people all day.
My two bio kids are exactly the same in that respect, prefer their own company most of the time.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by agreenwood » Tue Mar 28, 2023 10:17 pm

Good thread. My youngest was diagnosed during Covid.

For her it manifests itself in fixating/obsessing over things, anxiety and generally becoming completely overwhelmed by social situations. In her younger years she used to physically pull her hair out as a way of comforting herself. These days she masks it well, but the flip side to that is she’s often mentally exhausted at the end of most days.

The diagnosis was progress, but CAMHS et al are completely under resourced where we live and most post-diagnosis help comes with 12-18 month waiting lists.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:18 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 7:49 pm
It quite possibly comes from either you or your spouse, it's worth doing one of the free tests online to see how you score.

This is the test you ultimately end up doing as part of an assessment
https://embrace-autism.com/raads-r/#Wha ... cores_mean
I scored 132. No 8dea what means though :lol:

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:19 pm

agreenwood wrote:
Tue Mar 28, 2023 10:17 pm
Good thread. My youngest was diagnosed during Covid.

For her it manifests itself in fixating/obsessing over things, anxiety and generally becoming completely overwhelmed by social situations. In her younger years she used to physically pull her hair out as a way of comforting herself. These days she masks it well, but the flip side to that is she’s often mentally exhausted at the end of most days.

The diagnosis was progress, but CAMHS et al are completely under resourced where we live and most post-diagnosis help comes with 12-18 month waiting lists.
My daughter is similar l. We are waiting for camhs. She has bad anxiety which I have too.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by agreenwood » Tue Mar 28, 2023 10:22 pm

WestMidsClaret wrote:
Tue Mar 28, 2023 10:19 pm
My daughter is similar l. We are waiting for camhs. She has bad anxiety which I have too.
Sorry to hear that fella. It’s tough watching your daughter struggle, so I can only imagine coping with that and your own struggles.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:26 pm

agreenwood wrote:
Tue Mar 28, 2023 10:17 pm
Good thread. My youngest was diagnosed during Covid.

For her it manifests itself in fixating/obsessing over things, anxiety and generally becoming completely overwhelmed by social situations. In her younger years she used to physically pull her hair out as a way of comforting herself. These days she masks it well, but the flip side to that is she’s often mentally exhausted at the end of most days.

The diagnosis was progress, but CAMHS et al are completely under resourced where we live and most post-diagnosis help comes with 12-18 month waiting lists.
My daughter's anxiety manifests itself as stomach ache, that's something we've learned overtime.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:28 pm

WestMidsClaret wrote:
Tue Mar 28, 2023 10:18 pm
I scored 132. No 8dea what means though :lol:
You should probably speak to someone about it, especially as your daughter has been diagnosed.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:29 pm

agreenwood wrote:
Tue Mar 28, 2023 10:22 pm
Sorry to hear that fella. It’s tough watching your daughter struggle, so I can only imagine coping with that and your own struggles.
Thanks. It is what it is for me. I've had it since I was born so I've learned to manage it better sort of. I was put on some adhd medication and quickly taken off it after it made me have suicidal thoughts from nowhere. But yeah it's my daughter more then anything. I see her struggling and I try to talk to her about stuff but she's only 6 so doesn't really get it. And she had bad meltdowns and there's nothing I can do to help her really.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:30 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 10:28 pm
You should probably speak to someone about it, especially as your daughter has been diagnosed.
She hasn't Sid. They won't diagnose her. I'm the one who was diagnosed with adhd.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:33 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 10:26 pm
My daughter's anxiety manifests itself as stomach ache, that's something we've learned overtime.
Christ my daughter has just started recently doing the stomach ache thing.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:40 pm

WestMidsClaret wrote:
Tue Mar 28, 2023 10:30 pm
She hasn't Sid. They won't diagnose her. I'm the one who was diagnosed with adhd.
Ah sorry, I misread it.
So I've been diagnosed with ASD, but advised to get checked for ADHD because they can go hand in hand, despite being opposites in regards to behaviour.
You should still speak to the doctors about it.

In regards to your daughter, it took a year for our daughter to get diagnosed, same for me and that was in Berks and Oxfordshire respectively.

It's the same sort of waiting time for the ADHD I think the doc said.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:46 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 10:40 pm
Ah sorry, I misread it.
So I've been diagnosed with ASD, but advised to get checked for ADHD because they can go hand in hand, despite being opposites in regards to behaviour.
You should still speak to the doctors about it.

In regards to your daughter, it took a year for our daughter to get diagnosed, same for me and that was in Berks and Oxfordshire respectively.

It's the same sort of waiting time for the ADHD I think the doc said.
Cheers mate.
As far as my daughter is concerned they don't want to entertain it. They go against diagnosing girls with ADHD at a young age. The main problem being is they put girls and boys in the same bracket which they definitely should not. Girls and boys act differently at a young age, mostly, when they have adhd.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:48 pm

WestMidsClaret wrote:
Tue Mar 28, 2023 10:46 pm
Cheers mate.
As far as my daughter is concerned they don't want to entertain it. They go against diagnosing girls with ADHD at a young age. The main problem being is they put girls and boys in the same bracket which they definitely should not. Girls and boys act differently at a young age, mostly, when they have adhd.
That's odd though when you've got a diagnosis of it and the NHS recognise that it can be hereditary

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:53 pm

GodIsADeeJay81 wrote:
Tue Mar 28, 2023 10:48 pm
That's odd though when you've got a diagnosis of it and the NHS recognise that it can be hereditary
Is ADHD hereditary? I honestly have no idea. Phil Bardsley's Mrs has not long been diagnosed with it. Think she did a documentary about it on ITV.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Tue Mar 28, 2023 10:53 pm

WestMidsClaret wrote:
Tue Mar 28, 2023 10:53 pm
Is ADHD hereditary? I honestly have no idea. Phil Bardsley's Mrs has not long been diagnosed with it. Think she did a documentary about it on ITV.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by WestMidsClaret » Tue Mar 28, 2023 10:58 pm

Cheers for that. I know the Mrs was told by our doctor to tell someone about the fact i had it but when she spoke to a particular nurse they basically shut my Mrs down.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by elwaclaret » Tue Mar 28, 2023 11:27 pm

Too many variants within autism for there to be typical example or type. There are three main categories all of which have distinct associations - but you may have one, two or three variants simultaneously and all (or none) to varying levels. Add ADHD to the mix can create vastly differing ‘symptoms’. I’m no expert, and still going through the process, but was literally talking to Clinical Partners (specialists in academic needs) only today, re-organising an appointment I’d mixed up for today… it was in Liverpool, but who knew… and is now in Leeds.

The refusal to accept small children need help managing the conflicting messages autism gives you seems political (notice the small p). The sooner the condition is found the more that child can adapt to work out their own ‘best practices’ for getting through life and there would be a hell of a lot less suicide if autism screening was mandatory in schools.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Steeton claret » Wed Mar 29, 2023 6:16 am

Some of the things what was spotted with my son was he will push people away from him all of a sudden if there is more then about 3 people near him. Hard to get him to look at you. Throwing things ,lashing out, very delayed speech.very repetitive when he is playing with is toys or anything he does to be fair. He does not like change at all and will just melt down all of a sudden . It is challenging some days but other days are ok.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by Steeton claret » Wed Mar 29, 2023 7:54 am

I’ve just done the test and scored 175 looks like maybe I should go to the doctors to try get assessed for it looking at that score.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by fidelcastro » Wed Mar 29, 2023 4:24 pm

I have been officially diagnosed with autism today. It's been a long process of getting the assessments etc and now I feel somewhat overwhelmed. It's a lot to take in and I am still trying to process this news.

This thread has been a big help though. Thanks to those who have shared their stories.
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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Wed Mar 29, 2023 5:33 pm

Steeton claret wrote:
Wed Mar 29, 2023 7:54 am
I’ve just done the test and scored 175 looks like maybe I should go to the doctors to try get assessed for it looking at that score.
As a parent of someone with a diagnosis they'll be more inclined to put you forward for testing.

They'll ask you 6 questions that you've already answered from the test and based on your answers they'll say yay or nay for further testing.

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Re: Autism Acceptance Week March 27th - April 2nd.

Post by GodIsADeeJay81 » Thu Mar 30, 2023 9:01 am

fidelcastro wrote:
Wed Mar 29, 2023 4:24 pm
I have been officially diagnosed with autism today. It's been a long process of getting the assessments etc and now I feel somewhat overwhelmed. It's a lot to take in and I am still trying to process this news.

This thread has been a big help though. Thanks to those who have shared their stories.
There's lots of information out there to help you.
I also follow some stuff on Instagram, they talk about all aspects of ASD/Autism and it helps sometimes to know that you're not the only person to do certain things plus you can read about people's coping mechanisms and some of those can be used by yourself.
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