I'm autistic, AMA

[DrPeppersPhD]

I was diagnosed at 9, to differentiate from the other thread which was a late diognosis.

[Thisisit777]

Hi

What’s the best and worst things for you with regards to having an autism diagnosis.

Thanks for starting this thread!

[RubyLux]

Did you learn to talk late?
My son is 2, has no effective means of communicating and we're very worried. He's currently being assessed for ASD.

When did you begin to understand spoken language?
Thank you.

[DrPeppersPhD]

What’s the best and worst things for you with regards to having an autism diagnosis.
Best thing I would say is probably being able to tell people this is what I have, and I've been able to get some help from my 6th form and university. Worst thing is probably that people still don't really understand autism, so I spend a lot of time explaining how it actually affects me and no, I'm not like Sheldon and Sherlock.

Did you learn to talk late?
No, quite early actually. I couldn't give you an exact time but I could speak in full sentances by about 2, though I don't know how common that is since everybody in my family has been an early speaker.
Understanding spoken language,again I can't really tell you exactly but I'd say about the same time, maybe a little earlier, I could respond to questions before 2 but again, not sure if that's common.

[thighofrelief]

Have you struggled with crippling anxiety? DS19 is housebound with it.

[Verbena37]

Hi,
My son was diagnosed with high functioning ASD 2 yrs ago but still won’t acknowledge it to anybody, meaning we have to hide it in from anybody other than very close family and friends.

Did you just crack on with telling everybody you met from diagnosis onwards, or did it take time to adjust to knowing you had autism and did you have to work up to telling people?

[DrPeppersPhD]

Have you struggled with crippling anxiety? DS19 is housebound with it.
Yes, a lot. From the ages of about 11 to 16 I didn't go out unless it was to see my Dad or go to sport, and I had to give that up for anxiety because the thought of continuing gave me a panic attack. Even from 16 - almost 18 (and continuing today at a lower level) I was incredibly anxious, particularly about school work and this idea I'd got in my head of being "good enough", though I did hide it a bit better. I'm still a very anxious person today, though nowhere near as bad as I was after a couple of "break throughs" in my second year of A-Levels, and it's still a struggle to do some things even if I do try to throw myself into things head first and not worry about them so much.

Did you just crack on with telling everybody you met from diagnosis onwards, or did it take time to adjust to knowing you had autism and did you have to work up to telling people?
Since I was diagnosed so young part of this is more a question for my parents, since I never really had to adjust to my diagnosis myself (if that makes sense), but I do remember being told not to talk about it, almost as though it was a shameful secret. Yet, at the same time I felt very pressured into telling people and my Mum would frequently tell a lot of people when I didn't want them to know. Over time, with my parents not really knowing or caring what my autism actually meant I just got treated like a bad kid and by the time I'd got this idea into my head that I was some kind of monster, in large part because of my autism, that I would never be loved or wanted because I was just this horrible person and after I'd exhausted my academic usefulness I might as well be dead. Taking all that into account, I didn't want to tell anyone and was pretty reluctant to even mention it to my sixth form.
Now though, I still wouldn't say I rush to tell people but I'm not ashamed to tell people. So I do still have to work up do telling people, and I have a few very close and very trusted people who know all the ins and outs of it, but I don't exactly hide it either, if that makes sense.

[Verbena37]

Hi drpepper, thnks for the reply. That’s very interesting. Particularly hw your parents told you not to tell anyone.

My DH told me and DS not to tell anybody about it...not because he was ashamed but because he thought DS would be bullied.

DH has told people at work since but that’s because he knows none of them are friends parents etc.

Anyway, thanks for replying. I think we need to help DS get used to the diagnosis and start telling people if it’s helpful for them to know.

[DrPeppersPhD]

@Verbena37
Unfortunately, I think bullying is almost a given with autism because of how pronounced it can be (even in high functioning kids) until there's coping mechanisms that work. That doesn't excuse it, but it's a thing you'll have to be prepared from whether you tell people or not.
That said, autism is absolutely nothing to be ashamed of, and it doesn't necessarily stand in people's way academically or socially so he's not got to worry about that. Since it is still very misunderstood I understand why he wouldn't want to talk about it, but if nothing else (and I'm sure you're already doing this) encourage him to inform his school and UCAS (when/if that's relevant), and to also go for any benefits/concessions he might be entitled to (DSA, extra time in exams, use of a conputer or scribe, etc) because they are life savers! Obviously I don't know how old your DS is but as someone who's still in the education these things have been invaluable for me.

[tobee]

How old are you now @DrPeppersPhD? I'm interested to know if when (in terms of date) you were diagnosed might have made a difference to your, your parents' and everyone else's reaction. My dd is 23 and diagnosed last year btw.

[DrPeppersPhD]

How old are you now?
I'm 18, I think it probably did make a difference as our understanding of autism then wasn't a patch on what it is now, but I also think people (my parents specifically) kind of used ignorance as an excuse, and almost actively avoided learning about it.

[SawnUpLooRoll]

How does your autism show in or affect you? I understand that autism looks different in different people?

[colditz]

DrPeppers, how are you finding the transition to University and what support has there been available to you because of your autism

[DrPeppersPhD]

How does your autism show in or affect you?
I don't know if 'show in' is quite the right word, there isn't an autistic look per se, but it usually manifests in anxiety, so I'm quite often over anxious to please or "prove myself". I also tend to stim and gabble when I'm nervous, and I'm often quite paranoid about whether people like me or what they think of me. I'm also quite sensitive to sounds and touch so I get really easily overwhelmed and don't know how to verbalise that, which makes me look like a bit of an arse but hey hum.

[DrPeppersPhD]

how are you finding the transition to University and what support has there been available to you because of your autism
Support has been really good, I'm getting a mentor soon and the ones I've met are really friendly. I've also got an advisor, though I don't entirely know what role he plays but it's a contact to go to and he's been very helpful when I've needed him, making sure I don't go without support when needed. Also, the uni runs a 'support group' for the students with autism once a week, so once a week we hang out and drink soft drinks and catch up. Because I have an ILP as well, my lecturers are really understanding and accommodating, though I might have just got lucky on that front.
The transition itself has had its highs and its lows. I wasn't anywhere near as home sick as I thought I'd be, but then I didn't eat for about a week after arriving. I hated my course and even though I made some friends I really felt like I didn't belong. Now I've settled in though, I'm actually doing ok and I'm glad I've persevered (though I did change my course).

[sazza76]

Thank you for posting on ASk Me Anything DrPeppers. I am a mum to a 10 year old with autism, ADHD and a few other seperate things. I know it’s a very broad question but can you name two things that myself and his dad can do to support him through puberty when it arrives?

[DrPeppersPhD]

@sazza76
Sorry for taking ages to reply, uni work got a bit on top of me!
Obviously your DS isn't me so take this with a decent amount of salt but here's a few things I wish my parents had done:

1. reminded me I smelt bad, but in a much kinder way. My parents, specifically my Mum, would always say "Peppers, you need to start washing" in a tone of 'I've told you this and you're too stupid to listen'. Whatever you do, don't do that! However, having said that, try and keep reminding him because I know for a lot of people with autism it can be something they need pointing out to them, so do remind him to shower and use an appropriate amount of deodorant, but also if he is and it's not working the solution isn't necessarily wash more. I'm sure that sounds pretty obvious but like I say, it's something my parents forgot.
   Another thing (going along with the last point actually) is to remind him to take decent care of himself, but not embarrass him about it. He's going to get spots and mood swings and all that sort of stuff, and he does need to keep them under control but they are normal so teach him how to deal with them rather than trying to deal with them yourself if that makes sense.
   As he gets a bit older (not so much puberty but teenage years in general), encourage him to find something that he finds calming and encourage him to stick with it because as he gets into GCSEs and A-Levels this will be a life saver and will help him do a lot better if he's calm.
   I know this isn't exactly the response you asked for but if you need any other answers just ask me again.