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GoldenMom
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14 Oct 2019, 10:36 pm

Hello to all! I found this website a couple of days ago and decided to join in. 3 weeks ago everything changed.

As I was obsessively researching ASD due to my son’s possibly being on the spectrum, I began to suspect I was also likely to be autistic too. The more I read, the more I saw myself being described on books, YouTube videos and websites on the topic. I confess I was very ignorant of the spectrum, and the idea of autism being the reason why I never really fit in anywhere never really crossed my mind until 3 weeks ago.

This all happened while I was waiting for to get my son seen by a pediatric neurologist. He saw the doctor last week, but it was kind of useless. So I scheduled a visit for him with the Psychologist for this coming Wednesday. This Psychologist is specialized in ASD, ADHD, etc. so I feel better about it. But, anyway, on with the story. While my son was waiting for that neurologist visit, I went ahead and booked a visit for myself with this Psychologist. He said he saw some red flags for ASD, but that with me being a woman, a diagnosis as an adult is hard. I then went back for a 3-hr long testing session last week, and I am scheduled to see him again Wednesday, right before my son’s visit. He had me fill up 3 ASD questionnaires at home. My scores were WELL within the numbers for ASD. Like, one of the tests, an 80-question one, the cut off for ASD is >=65, and I scored 134.

My son’s signs are getting very evident now - he is 9. He is a bright and sweet boy. We are seeing some issues with following multi-step directions, which is now affecting school. I also see sensory issues, difficulty transitioning to new activity, lack of eye contact with teacher and classmates, and a plethora of other things.

I want to help him so much, but tonight I’m feeling extra overwhelmed because I’m trying to deal with my own issues too and I still don’t know how to help him just yet. I think if I know myself better (under the frame of ASD - which is totally new to me), I believe I will be able to help him better. But I’m not there yet. Hence my being overwhelmed today.

I just needed to share this with people who can understand this. I’m not sure if my Psychologist will diagnose me or my son with ASD or not. But right now, from what I’ve read so far, this diagnosis would explain a lot. In my case, it would be the answer I’ve been looking for all my life. For my son, I would hope it would show me the direction to prevent him from having the difficulties I had growing up not knowing.

Sorry for the long post. I’m looking forward to reading all your posts in the sections of this forum. :heart: Hoping to have found my tribe here. :wink:


_________________
- RAADS-R: 134 (cut off for ASD diagnosis is >=65)
- CASD: 20 (cut off for ASD >=14)
- SRS-2: T score = 68

Diagnosed with ASD Level 1 on 10/28/19 (Better late than never)

Mom to 9 y/o boy diagnosed with ASD and ADHD on 11/15/19


IsabellaLinton
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14 Oct 2019, 10:42 pm

Hello, GoldenMom. Welcome to the fray. 8)

I was just assessed last year so I know all too well what you're going through.

I likely post this a ridiculous number of times, but here's a helpful link which I encourage all women to read when they're new to the concept of female autism:

https://the-art-of-autism.com/females-a ... checklist/



GoldenMom
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14 Oct 2019, 10:49 pm

Hi Isabella! Thanks! Yes, I had seen this! A LOT in that list applies to me. :D That is an excellent resource! Please keep posting it to newbie women!


_________________
- RAADS-R: 134 (cut off for ASD diagnosis is >=65)
- CASD: 20 (cut off for ASD >=14)
- SRS-2: T score = 68

Diagnosed with ASD Level 1 on 10/28/19 (Better late than never)

Mom to 9 y/o boy diagnosed with ASD and ADHD on 11/15/19


aquafelix
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15 Oct 2019, 3:47 am

Welcome, I hope you find your tribe



Juliette
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15 Oct 2019, 4:41 pm

Hi and a very warm welcome to you :). Really is lovely to have you with us. Feel free to ask any questions or seek comfort on any of the boards here, and the Parents Section is very good for sharing parenting issues. You have alot to deal with right now, and we're here for you if you need us 8) .



Mountain Goat
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15 Oct 2019, 4:49 pm

Welcome to Wrong Planet. You will fit in fine here! :)


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Awaiting asessment. Neurodiverse 173/200. Neurotypical 21/200.
Empathy 11/80. AQ 39. May make sense to some. :)


GoldenMom
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15 Oct 2019, 5:24 pm

Thank you guys! This means a lot to me!! ! :)


_________________
- RAADS-R: 134 (cut off for ASD diagnosis is >=65)
- CASD: 20 (cut off for ASD >=14)
- SRS-2: T score = 68

Diagnosed with ASD Level 1 on 10/28/19 (Better late than never)

Mom to 9 y/o boy diagnosed with ASD and ADHD on 11/15/19


Trogluddite
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15 Oct 2019, 7:00 pm

Welcome GoldenMom!

Yes, it's a bit of rollercoaster when the potential diagnosis comes out of the blue like that isn't it? That's how it was for me, too. I had plenty enough insight into many ways that I felt out of place in the world, but I was stunned when a psychologist suggested autism. How the heck could I have been autistic for decades without anyone noticing, least of all me?!

I think getting to know yourself a little better sounds like a good plan. The journey can have its ups and downs, especially to begin with; but this is a great place to get support from folks who've lived through similar experiences, whether it's because you're at your wits end, or you want to share an epiphany. I've also seen how, on forums like this one, autistic adults can sometimes really help parents to understand aspects of their child's behaviour which would be very difficult for a non-autistic parent to get any insight into any other way (hard to believe, but I was an autistic little boy once upon a time!). As you settle into your own diagnosis (whether formal or just useful in practice - we don't care which here), you will find yourself seeing your past in a whole new light, likely including even your childhood memories. Like the advice you get here, you will undoubtedly discover valuable things to pass onto your son because you've walked a mile in his shoes.

Best wishes to you both.


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SharonB
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15 Oct 2019, 7:43 pm

Does this sound familiar: I started looking into ASD a few months ago for my daughter who is now 8. Long story short, ****my**** assessment is scheduled for next week. Hers is yet to be booked because there are THREE intake forms (which I haven't looked at yet, but find daunting from afar).



BTDT
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15 Oct 2019, 8:08 pm

Welcome!

Yes, it is easy to get overwhelmed. In fact, I would go as far as to say from what I've read that diagnosed kids these days are over-treated. They are so stressed from all the help they get that it becomes counter-productive!



GoldenMom
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16 Oct 2019, 4:37 am

Wow. Thank you so much for the support! It is comforting to know that you guys understand! Even some of you have a similar story! Really, thank you so much!! !

I’m thinking, how did I miss this! I’m having so many epiphanies! Looking at my memories from an ASD perspective makes everything make so much sense! I have no idea why I never considered it! I remember lining up toys, walking and running on my toes, I have so many sensory issues, I still occasionally sway back and forth or side to side (granted, most of the time I don’t notice I’m doing it), I can’t do eye contact whatsoever (have to look at people’s mouths instead), just to mention a few things... - I mean, how did I not know?

We are meeting with the Psychologist today. I can’t sleep right now - been awake since 3:30 am...


_________________
- RAADS-R: 134 (cut off for ASD diagnosis is >=65)
- CASD: 20 (cut off for ASD >=14)
- SRS-2: T score = 68

Diagnosed with ASD Level 1 on 10/28/19 (Better late than never)

Mom to 9 y/o boy diagnosed with ASD and ADHD on 11/15/19


SharonB
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16 Oct 2019, 4:56 am

GoldenMom wrote:
I’m thinking, how did I miss this!
...
We are meeting with the Psychologist today. I can’t sleep right now - been awake since 3:30 am...


Right? Earlier this evening I read a college letter from a friend that goes back nearly 30 years and he wrote his impression of me and my situation and he was basically describing the "intense world" theory of Autism. "Write" there. But we didn't know what to *do* about it. How to accept myself and find my power when the world in general was giving me "you crazy" vibes.

Did you have better luck/DNA at being confident in yourself? Maybe my daughter is... or will be.

I'm having an overnight tea, then will go back to bed.



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16 Oct 2019, 5:44 am

I can understand how you feel. I am on the list to be assessed. It is only by following a hunch that I asked to be assessed. Well... A hunch came in the form of several people mentioning it and dating a lady with aspergers syndrome who I could not really fathom out how she was any different to me except when she said that she has her own language in her mind which she then translates into English. For me I think in pictures a lot in my deep inner mind so when I do maths, I will be counting spots arranged almost (But not quite) like dice. Hence for me to show workings out in a maths exam is ot easy, as I have to first do the sum, and then work backwards in my mind to show the acceptable form of showing the workings out if that makes sense?
But even while I was still dating her, I had a surreal situation where someone who had committed suicide told me (He was in a coma for 6 months so it was why e had ot been in touch... I knew nothing about his suicide attempt)... Well. He told me how he was found to be an aspie, and he said this in his garage which had a room we went in to chat... His wife was in the house. He said they were getting a divorce, and pointing to a lady who was with him in the garage he said "And this is my new girlfriend" (Was his humour. I found out that this was his support worker). Well. I was so taken aback that when he then said "I have asperges syndrome and I know that you have it too" I honestly thought that he had gone mad!
I just did not know what to think. I thought "OK.... I think it's time for me to go" when he said I would be seeing his new girlfriend in the future... Uhmmm.... I just did not get what he was on about!

But anyway... As the ex GF had me take a simple online test where I put "No" to any of the technical words I didn't know what they were like "Stimming" etc (The ex. GF said stimming was rocking back and fore which I don't do though I have since found out that I stim in quite a few other more hidden ways), and so on this test I had a boarderline result of 32 out of 50 (Trying the test twice again gave me 41 ad then 39) . It said "See a health professional".
I had to see my doctor several times over another issue, so I thought I would ask...But every time I went to ask I would clam up. My brain went blank. I just couldn't speak. I was ok speaking about the origional issue. But to try to speak about this? It wasn't happening.
It took me 2 years to ask and this was spurred on by an occasion where for three days I was looking at faceblindness on Youtube. I get this and so does my mother. A certain link kept coming up again and again called "Ask an Autistic". To be honest, I was doing all I could to avoid clicking on this link but it kept coming back, and as I finally exhausted every other link on the subject, on the third day I clicked on it.
The lady was so clear and precise. She said that some 60% of those with prosopragnosia (Faceblindness) were autistic. I was a bit gobsmacked. The first time it dawned on me without me half heartedly dismissing it. I started wztching all her short films that I could find. It still didn't dawn on me that I had some of these traits at the time but something stood out about what she said about meltdowns as somehow there was something similar somehow as to what I get, and have had since I was a child... Something which I found hard or almoat impossible to describe which I called "Energy loss" (I didn't have a clue what to call it as my body goes limp etc)... Somehow, there was some sort of link but I could not figure it out.
So armed with a question and wanting to know for sure if I had aspergers syndrome (The ex.GF's son has autism which he is very noticeably effected by it, so I didn't think I was autistic, but aspergers seemed to fit what I had somehow)... Knowing I had clammed up, I brought my mother in with me (Who didn't think I have aspergers but was willing to come with me to ask. I am convinced she has aspergers syndrome too! Haha!), and we saw a different doctor who was known to be a bit blunt and straight to the point.
To get my mind to ask, I have to "Decieve it". I have to start talking about something loosely related to the question I want to ask, so I started talking about faceblindness and the doctor said "So?" (As if that in itself was not an issue. I failed college partly dut to faceblindness)... and I carried on and asked if meltdowns caused energy loss. The doctor said "Definately not". I asked her if I could have Aspergers sndrome and she said "Symptoms?" Then I clammed up. This direct approach stopped me in my tracks!
My Mum then spoke up saying how I was having difficulty staying in a job. Then I was able to say something very minor (I can't remember what).
The doctor said she would pass my details on to the assessment team but she very much doubted that I would be accepted. This was a bit of a shock because I really wanted to rule in or rule out to see if what I called "Energy loss" (Since found they are likely to be partial shutdowns) and I expected the doctor to give me a "Yes" or "No" answer.
Cut a long story short. They did accept me on the list. The list is quite a long list so is a lengthy wait.

In frustration to ask if it was possible, I joined this site. I very rarely join sites. I just keep to just a few and use them daily. I think I am only on about six or seven sites in all. I rarely explore any of the rest of the internet. I just can't think outside my area of thought to pick another subject.

Anyway. It was when I came on here, not only did I learn about partial shutdowns and shutdowns, I have had shock after shock after shock to learn that parts of my character (I am definately very unique and individual) were autistic traits! I was like "No... It can't be.. Did you say....?" I couldn't believe it!

So here I am now on a list to be assessed.... And I have finally had help as I was finding working was becoming impossible to do... Anxiety levels were far too high causing a string of partial shutdowns daily and the occasional shutdown.

Now I am claiming a benefit(Not had any payment yet) I have started to relax so I have managed to go for a day or two without partly shutting down.... I have not had that for ages. Not two days in a row. I feel so happy as it feels like I am improving rather then heading the other way. It is a miracle for me as I have had so many years of decline with increasing partial shutdowns where I've been trying to struggle through... Some years not being able to work at all or claim as I was not up to claiming... Couldn't go sick as I could not explain to doctors what I was struggling with... (It was only through this site and the tallented people in here that I realized what anxiety was as drs would ask me if I was anxious and I would say "No". Realized I have had it for years and years and years! Ever since I was a child.)


_________________
Awaiting asessment. Neurodiverse 173/200. Neurotypical 21/200.
Empathy 11/80. AQ 39. May make sense to some. :)


GoldenMom
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16 Oct 2019, 6:57 am

Mountain Goat!! ! Wow! What a story! I totally get it.

Yes! Don’t even get me started with the facial blindness, anxiety and the fatigue thing. Ever since I was little I had a hard time recognizing people. When I started dating my husband, I was afraid I wouldn’t recognize him when I was waiting for him for a date. One time, he shaved off his beard and didn’t tell me. He was coming to meet me and I see this man smiling at me, coming to hug me... freaked me out. :D

Growing up, I would have spells of lack of strength in my hands to the point I could not open the toothpaste cap in the morning. No one really believed me. They thought I was making that up. As an adult now, I have developed other problems and I am chronically fatigued and struggle with low blood pressure spells. But I’m not sure these specific symptoms could be related to ASD. Can any of you relate to this?

I didn’t know I was anxious until I started researching ASD for my son. I thought I was just thinking ahead and preparing for different possibilities and outcomes.


_________________
- RAADS-R: 134 (cut off for ASD diagnosis is >=65)
- CASD: 20 (cut off for ASD >=14)
- SRS-2: T score = 68

Diagnosed with ASD Level 1 on 10/28/19 (Better late than never)

Mom to 9 y/o boy diagnosed with ASD and ADHD on 11/15/19


Mountain Goat
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16 Oct 2019, 7:18 am

Opening things. Yes. I am getting diifficulties like that now. It started about four or five years ago. I always had strong hands. But, for some reason, opening things like packets of crisps and things like that isn't easy. It also happened that I started to have throat closing issues. Also, along with the weak hands, I also find that it feels like my arms are somehow not connected the same? Almost like a mild cramp type of feeling inbetween my arms?
When I was in collage... I mean college... Seemed more like collage to me.... Well. These two girls kept trying to hang around. I was too shy to talk to them and they were shy as well. I wrote a note to them and sent it via another student. I found myself on a date with one of them. I was about 16 and a half years old at the time. It was winter. I was to meet her outside the college gates after college had finished. Fair enough. Next to the college was a school for 4 to 11 year olds. I went to the gates. All the mums dissapeared. Just one mum left standing there under her umbrella.
Where was she? I then realized there were more gates around the college. Five gates in all as it was quite a size. Maybe she was around one of these? As time was getting on and it was starting to get dark (Was dark by 4pm) I unlocked my bicycle and went from gate to gate. Nope. Only that lady under her umbrella. At one time I was standing right next to her. Where was this girl? Eventually I called it a day and cycled back home.
The next day of college, her friend approached me and said "Why did you stand her up?" (Or set her up?) Aparently she was there all the time. I just didn't recognize her. It was the young lady under the umbrella I assume. No one else was there. I just thought that her kid was late from school. I just didn't know it was her!
I was soo upset and blmed myself for many years. I refused to date any lady that asked me until I eventually gave in and started dating in my mid 30's.


_________________
Awaiting asessment. Neurodiverse 173/200. Neurotypical 21/200.
Empathy 11/80. AQ 39. May make sense to some. :)