Published on 12, July, 2020
Hello, I'm new to the world of autism. I'm not actually diagnosed quite yet but I am almost positive I'm on the spectrum. I've done online tests and each one agreed I was likely autistic and I've read up on it so many times and I have a lot of traits that match up. I'm tempted to go private, the waiting is causing distress to me and I have a lot else on my plate at the same time and struggle to balance it all out.
That is one of my questions which I am hoping you can advise me on. Should I continue waiting or go private for the diagnosis? I'm not sure if it will be any faster and also if it's as good as the NHS. I went private for dentist before lockdown and I found it was worse. Not sure what to do here.
My other problem is anxiety. I'm constantly anxious and I read up on it and read about things to do like breathing exercises but they didn't work for me. I also tried yoga and that didn't work either. Any advice for this is welcome.
Last is sleeping. I don't sleep much. I get about three hours and then I'm awake again and feel refreshed. I spend most of the night awake doing things I also do during the day. But I don't think it's insomnia because I feel awake, it's not like I'm dead tired all the time. Has anyone else been like this?
If it's ok to do so I'm going to continue posting my journey here.
I reasoned it like that: because you continue to be active, your body needs more fuel, brain is massive energy consumer, and takes only glucose
My diet isn't balanced, I overeat to compensate possibly a bit too, you could say I'm pescaterian, though once a month I need beef, to compensate for my blood's shortcomings, low iron absorption and retention, meaning low hemoglobin
so:
no ready meals
sweet potato instead of white
no pasta
very little and wholemeal only bread, (e.g.2 slices to make a ham and humus sandwich for a lunchbreak at work, topped up with boiled egg, raw tomatos and raw peppers)
fish, I like mackarel a lot
fruits, veggies in all variaties, a lot beans and nuts in it
rice
I would still eat chicken if it wasn't for poisoning I got few years back
I survived the public event this morning. It was anxiety inducing but I just about forced myself through. I have another day of events tomorrow but Sunday is my day to relax.
I wonder if I need to eat more then like you. I get my few hours sleep but the rest I'm awake but I do feel hungry. My diet is very bland so I might make a food diary see what I like and don't.
What do you tend to eat? If you could help me have a similar diet that would be good.
anxiety in response to stressful situations is perfectly normal, but to much in short period of time might overload you, you do not want to have a meltdown in public
less sleep without downside is a nice bonus I would say, you might find out you need to eat more, like I did
just remember to have days to relax and recharge without any stress, or you will burn out eventually
They do certainly sound the best out there. Everyone sings their praises and I had another email come in and a woman would like to have a chat with me so that sounds promising, unless I'm getting my hopes up here and expecting too much.
I guess I will wait and see what happens during our chat. I mean, I'd prefer Lorna Wing Centre as it's very close and you and everyone else recommend it above all others. So it's ideal.
My anxiety is very bad today. I have a public event to go to which will involve a lot of people and interaction, not my strong suit at all. And all this business fries me.
I'll keep you posted on how it all goes.
Thanks Dawn.
The Lorna Wing Centre really are the best. The are in the vanguard of the latest understanding. The are expert in subtler presentations and co-morbidities and yes, they are absolutely lovely to talk to. You couldn't be in better hands.
The bad news is, because they really are top of their game, so every body wants their service, and because of the pandemic, they were having a problem with their wait times, albeit no where near as bad as the NHS. I hope they are clearing the back log so they can see you sooner rather than later.
I waited 10 months. It would have been years on the NHS and my problem was too immediate for that.
You will find providers who could do it sooner again, but frankly the ones with the good reputations are the ones who have the longer wait times.
Personally, I'd recommend the Lorna Wing Centre even if you do wait a little while, because in the end you will know it was done right.
And yes, you will find them very patient.
Good luck
Hello James, just a quick update. Sara emailed me back personally last night and is willing to talk to me and set up a diagnostic.
Thank you very much. I owe you!
:)
I just sent an email to the Lorna Wing Centre. Hopefully I will hear back soon.
Hello James, thank you very much I hadn't heard of her before but having looked her up she does sound like someone I need to reach out to. Getting alone time for a call here is rare so I sent an email to start. To be fair I'm not that good on the phone, I always come across clearer through my writing.
It does sound good and that's a good wait time. Much more what I am after. Currently I think I could be waiting for more than a year and that's no good for me.
Thank you James/Jamie.
Hello Dawn, thank you very much. This has given me a lot of options to consider and think over. It's always good to get others opinions and suggestions for things like this I think. It gives you things from a different angle and is a big help for me.
It does seem to be area related for private and NHS service quality. The private dentist I saw was terrible. No understanding or support and in my opinion, quite rude. But it was quicker private and I prefer seeing people quicker as waiting makes me anxious. My mother assured me they were the best but I disagree, not good at all.
That is perfect. I looked up the Lorna Wing Centre and it's very close to where I live, maybe a sign that I need to follow the route you took Dawn. Did you find them patient? I find with myself people need to be patient with me as I get worked up fast and am prone to fainting. Are you comfortable sharing how long you had to wait? Just so I have a rough idea.
I think I will do the same as you did Dawn but I will stay on the NHS waiting list for now just in case.
Thank you very much Dawn.
Private might be your answer, but bare in mind a few things.
1) Check out with your Trust what the policy is if you get a private assessment. Mine will not re-assess anyone who has a private assessment but will not provide post diagnostic support either. Some areas I hear will only accept NHS diagnosis, others it makes no difference. This is of course all nuts. What matters, or should matter is that you get one that has been properly done. However, whatever your local answer is will feed your decision, I'm sure.
2) As with dentists; private can be way better than the NHS or indeed worse. Just as some NHS services are excellent in some post codes and rubbish in others. I've heard poor tales of some NHS diagnostic services, but also met with private clinical psychologists who genuinely do know what they are talking about, who have been called upon to sort out some shoddily done assessments either telling people they are autistic when they aren't, or aren't when they are which were done privately. So, moral of the story is really check out the qualification set and experience of the person and their reputation.
Personally, I went with the NAS's own diagnostic service; the Lorna Wing Centre, so I knew I was in the hands of the best. And they were excellent! Although private, they too had a waiting list, albeit much shorted than the NHS.
3) If you do go private, I wouldn't leave the NHS waiting list until you have had your private assessment and are happy it's right.