The Autism Diagnosis Process in the UK (From Autistic Adults)

Hey, 

My name is Ruby and some of you might not know but I have Autism. I was diagnosed when I was 22 (I'm now 23) and after a 4 year process of diagnosis I finally got my letter and now talk openly about it online. Through sharing my experience many friends, family and strangers have asked me about what they should do if they feel they may be Autistic or are showing Autistic traits. I have made a video about my journey which I will link below but I wanted to do a simple blog post to share mine, and other Autistic adults' experiences. 

https://www.youtube.com/watch?v=JEHTC2VnRKA 

You may notice when reading them that they differ, this is because each service is different and can be affected by funding in the area, your age, gender and medical history. This is why I wanted to give several different accounts so you can see the similarities. 

I will be sharing my experience from being diagnosed in Plymouth (note every single person will have a different diagnosis story). 

(Verrrrrry short version) - I wish it was that simple. 

• Did online test, scored highly likely 
• Told my GP, did another test 
• Scored high enough for referral 
• Got appointment with psychiatrist 
• Had to go back 
• Got a formal diagnosis 

I moved to Plymouth to study at the University, and during my first year I was placed into halls. Autism was something I had a particular interest in having dated a boy on the spectrum and started researching into it so when channel 4 did a program on Autism which was accompanied by a test you could do at home, my flat and I all took it. I seemed to score very highly on this test (all it meant was I may need to see someone if I was interested further and was no way an official diagnosis). This then became common knowledge in the flat and we started to really notice how many traits I was presenting. We would make jokes at my expense which really helped me process the fact I could be, it was never ever a negative thing for all of us. 

We often discussed me going further with the test but I was too afraid to speak to my family about it as I didn't know what the reaction would be. Come the end of first year and I took my mum to go see the touring production of The Curious Incident Of the Dog in the Nighttime. When watching I saw so much of myself in Christopher the main character (who is believed to have Autism although never stated) and I simply brought it up to my mum that the flat and I thought I could be Autistic. She didn't understand at the time and simply laughed it off thinking I couldn't possibly be because of my communication skills. I put the idea to bed for a bit. 

Come second year and things got hard, I struggled hugely with my sensory overloads and it was beginning to impact my degree. I started discussing the idea that I may be on the spectrum with my councillor who definitely agree and said it was worth me being tested. I called my doctor and told them I thought I had Autism and nothing happened. I put the idea to bed once again. About 6 months later after looking at the pricing of private testing I knew I had no other option but to try my GP again. 

This time I had a phone call with the Mental Health nurse within the surgery, this was my first step as she agreed straight away and sent me in for a face to face meeting. I say meeting, when this happened all I did was fill out a checklist sheet to see if I got the minimum score for testing. I did and so he said he would refer me. 

This is where the problems started. I didn't hear from them for months and months, something that is common in the process but not great when you have high anxiety and it was hard enough to go to the doctors. I think I called 30 times trying to get through, first I had the wrong number, then wrong department and then they wouldn't pick up, or would lose my address. It felt like one thing after another but I wasn't going to give up. I finally got an appointment! Which they cancelled and didn't tell me about....oh.

Another 6 months down the line and I had an actual appointment but not really much information about it. I showed up and got told that a questionnaire should have been sent to me, of course, it hadn't. This meant everything would be delayed further. I did an initial meeting where I left in tears, feeling defeated as the doctor told me 'But you can communicate, you have a nose ring and nice clothes'. I knew that females differed to males, but he didn't seem to. I was sent away with my questionnaire and didn't hear a thing. 

Guess what, another 6 months down the line I'm called for an update appointment, apparently I was supposed to be told earlier but shocking, I wasn't. Over this time I had approached the topic with my mum again and it took her a while to understand but once she did she turned into my biggest support. She said she would drive down from our home to come with me. During second meeting I got told I should have brought family the first time, again this wasn't communicated to me. After speaking to my mum, further rude comments about me and an hour later we left getting told I would receive a letter saying if I was Autistic. I waited and waited. Until one day I went to the doctors for a completely unrelated thing and saw on my notes it said ASD. They knew something I didn't, I called the next day requesting my notes and turns out I had been diagnosed 2 months after the 2nd appointment and you guessed it, no one told me. We never got any of the support promised, we never heard from them again. 

So after battling and being completely burnt out from the process I'm out the other side. It was one of the hardest things I've done, but to have that diagnosis, to understand myself and feel grounded and understood. That means everything and it made it all worth it. 

I'm sorry my experience wasn't simpler, or happy, but that's the truth of the current system. It's long, it's shit but it's worth it. 

Others experiences: 

(female) 

I was diagnosed at the end of February this year aged 22 (now 23). My mum started to think I was autistic from the age of 14/15 when she was attended conferences about autism in girls because my younger sister had just been diagnosed. However when she went to these conferences, some of the speakers stories related to me so much that she went and spoke to them at the end and asked what to do?! My mental health was awful at the time and I wasn't in the right place to look into it. When I was 22 and had just started my second year of university, I was much more aware of my differences and my social struggles. I started following female autistic advocates online and realised how much I related to them. I had an appointment with a psychologist who came to my uni once a week. She got me to complete the cambridge autism Spectrum quotient (?) And another questionnaire and she told me that from these results, I was eligible for assessment.A couple of months later I saw my GP who got me to do a 10 point questionnaire and then he referred me to the local diagnostic organisation (NHS). 7 months later I had my assessment and was diagnosed with Autism Spectrum Disorder. 

 

(Male)

1. Go to the GP and talk to them about getting a referral.

2. The Dr will then refer you to the wellbeing team if they feel you qualify (this fact really annoys me, as there are GPs that could do with autistic awareness training).

3. The wellbeing team will then call you on the phone. Yes on the phone for a chat. They ask a load of questions which they will have a check sheet for. This is supposed to be a triage style thing, but is essentially another gate keeper that you have to pass in order to get to the next stage.4. If the wellbeing team phone call goes in your favour, they will then put your name on another waiting list, to have the first face to face meeting with one of the autistic diagnostic team.This is another load of questions about your life and why you think you could be autistic.Once this meeting is over, you will then receive a letter once the team has met to discuss your case. If they feel you qualify for the next round, you get invited to the diagnostic centre.

5. The diagnosis assessment centre usually invite you to three separate meetings, the first two to ask you yet more questions, similar to the ones in the for face to face. The third session is when they go through the results with you. I had all three of my final sessions on one day (which burnt me out no end), and was told I was autistic in the final hour long session.

6. I then received my paperwork through the post.

 

(Female in between services)

Hi, i seen your story about being diagnosed. I was being assessed when I was 17 and got diagnosed at with autism spectrum disorder at 18, I am now 19. My autism makes me uncomfortable talking to strangers sometimes and for some reason I am more shy with other around my family but during the assessment I felt really uncomfortable mainly due to the fact I was under 18 (17) therefore classed as a child and had to do the assessment they do for those under 18 and I was uncomfortable that I had to do tasks a young child would do but I understand that's how the system worked. My mum also had a session of giving information and we didn't get the result until months later but we knew I was on the spectrum so it wasn't a surprise it was just a lot to take in.After being diagnosed, we were told (me&mum) that we would receive a phone call in a few months about what help i could receive. We never got that phone call. Then when I went to my physical examination my mum asked if there was any help towards my anxiety due to my autism, as we didn't know what to look for since I was classed as a child when being assessed but am now an adult. The lady was nice and gave us a place she knew off. So my mum phoned them and we received a latter saying I was on the waiting list. No more than a month later I got a letter saying I wasn't qualified for help at that place, so now we are back to square one on finding help that isn't medication because that is our last option.

I hope this helped at all, 

Love you all, 

Ruby xxx

5 EASY SUSTAINABLE CHANGES

Hey guys! 

We are want to do our part to save the planet but sometimes you don't know where to start. I have found just 5 simple changes you can make in your life to become more sustainable. 

Item 1: Make Up Pads

www.amazon.co.uk/gp/product/B07H865HM5/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

​These are bamboo make up pads, they're super easy to use, take your cleanser and apply onto the pad and wipe your face with some warm water. They come with a handy bag that you just pop into the washing machine with your clothes and they're good to go for next time. Make up wipes are not biodegradable so these are a simple change (and so cheap) that can make a huge difference. 

​Item 2: Metal Straws

https://www.amazon.co.uk/Safety-Tested-Stainless-Drinking-Straws/dp/B07MFFRF92/ref=sr_1_2_sspa?keywords=metal+straws&qid=1558915210&s=beauty&sr=1-2-spons&psc=1

We've all seen action being taken against plastic straws, these metal straws are such an easy way to know that you'll have a straw wherever you go and you don't have to use single use plastic! They come with brushes that can clean the straws but I pop mine into the cutlery part of the dishwasher and they come out nice and clean! 

Item 3: Shampoo Bar

https://uk.lush.com/products/shampoo/jason-and-argan-oil

These are naked shampoo bars from Lush, they're completely free of packaging and they last 80-100 washes so you get a good amount out of them! To get them to lather simply put them under running water and start to rub in your hands. They have several different version with different ingredients but I choose my favourite because of the really nourishing Argan oil, it's such a treat for your hair!  

Item 4: Bees Wax Wraps 

https://www.etsy.com/uk/listing/588037901/vegan-wax-wrap-in-pink-floral-zero-waste?ref=pla_similar_listing_top-1&frs=1

​These bees wax wraps are a great alternative to cling film, which is non recyclable. The wax means they are mouldable around any object like a bowl or plate and they come in such cute designs. By buying on Etsy you are also able to support some small businesses! 

Item 5: Bamboo Toothbrush 

https://www.anythingbutplastic.co.uk/product-page/bamboo-toothbrush 

These are pretty self explanatory, they're just toothbrushes made out of bamboo so no plastic which is wonderful. I also wanted to share this particular link because this website  has a huge amount of alternatives if you want to carry on exploring the possibilities of what you can exchange in your everyday life. It's so fun to just look through the site and see all the amazing products they have on there. 

I hope this post has been useful, feel free to share your favourite sustainable products down below! 

Ruby xx

HOW I TAKE MY OWN INSTAGRAM PHOTOS!

 

Hey guys, 

Today I'm going to share a few tips and tricks I have picked up from trying to take my own Instagram posts. A photographer isn't always on hand, so here is how I do it using what I've got! 

Self Timer:

Okay this may sound like a simple one, and everyone is used to using self timer to take the best shot, when but you're trying to get a certain style or look it can take a bit of practice. As we all know the selfie camera's quality is not as good as the front facing one but thats difficult when you need to frame yourself without just going blindly. Here's my trick, set up the camera on selfie mode, put on the self time and take the shot, this won't be the final one but it will give you a really good idea about the poses and angles you need to hit to get the perfect shot. Once you're happy flip the camera round and use the better quality one for the final shot! Keep this going until you've got the one!

Film it: 

This is 100% a stolen tip from BestDressed who is the absolute babe of taking her own photos but it really really works. Rather than taking a still, put your camera on video mode and start filming. This does work better on a camera rather than a phone because of the quality but both works. If you have a camera with a flip out screen it will be easier to see what you're doing. When filming change up you're poses in a good speed that you have enough variation but when you screenshot the video it isn't blurry. You then have a few 1 minute long videos full of photos then when you edit would never show it was never a still! 

Camera remote: 
On both my camera's I have a camera remote, my canon one cost me £5 on amazon and it was one of the best things I brought. It meant I could click the shutter when I was in the perfect position and continuously do this without having to run back and fourth to put on the timer. It's very simple to use and honestly changed the game for my photography. On my panasonic it can be connected to my phone to take the shot. This one is harder as your phone is more obvious than a small remote so it may be harder to hide it out the way if it doesn't fit the shot but downloading the app just when you need it is very simple. It also means you can download the image straight onto your phone to start editing. 

Confidence: 
Again, this is going to sound obvious and corny but when you're in public and taking your own photos you really need to have the confidence to do it. People may stare at you which isn't a bad thing but can become quite intimidating when you're trying to do a shoot. You have to remind yourself that you're not going to see these people again and you know you're going to get a great shot from it!

I hope you liked these little tips and tricks, let me know if you have any more! 

Ruby xx

Travelling with Anxiety

Hey guys, 

Another long time no see, I recently did my Interrail tips and I've actually gone twice now so I thought I would write a post about how I manage my anxiety while travelling. There are a few things I always need to have in place before I've even set off and when I'm away. 

Organisation: 

Personally for me I feel a lot calmer when everything is organised and I know the details about flight times, train times, map, hotel details and a bit about the country. I keep all of these in a word document before travelling and then usually print out the information to make an on the go folder. You can see some examples of my tables with my information on in my interrail post. By doing this you can make sure you are in control of your surroundings even in an unfamiliar place because you've done your research.

Medication: 

I am on anti-anxiety medication that I take everyday but when I know I am flying, because I have a huge fear of it, I go to the doctor and ask for stronger, one time use drugs. I use Diazepam and they work brilliantly for me but I know people have done well on Beta Blockers as well it just depends what works on you. 

Flying: 

When knowing I'm getting on a plane, in the months leading up to the flight I will do some positive thinking. This may sound like the simplest and silliest thing to say but it has a huge amount of power. The anxiety is already your perception of the situation so there is no reason that you can actively change that. I do have to say you need to be in the right place to do this, because of my on-going medication I am able to work on this. You have to change the language you use around the flight so I tried to always say I was excited not worried, and I would try and turn those negative feelings into my stomach into thinking they were excitement. 

Another thing to do on a flight is bring an activity. Usually something that you've not opened so it's new and fresh and you can't wait to open it. This could be a new book, colouring, or some new skincare products. I know people bring a full skin care routine to do on a plane which is a great idea because it can be drying on the skin. Just make sure you'll have that distraction with you, I like trying to film to turn it into to art rather fear. 

New culture:

If you're nervous about entering a new country with a new culture and language, just do some research. Learn a few bits about what's respectful in that country, for example you may need to cover up in certain places and you'll feel more comfortable knowing that going in. You can also learn a few bits of the language, just greetings and please and thank you's are good to show you are trying and giving respect to them. 

Comforts:

Don't be afraid to bring the things that comfort you. I am 21 and I bring my toy rabbit with me everywhere I travel because she is a source of comfort and when you have anxiety you need those things you know will help calm you. This could also be a music playlist that you need to listen to, or a certain type of food. Don't ever be afraid to do what you need to do in order to make yourself comfortable. 

It's okay not being okay (yes I know):

It is true, on holiday or travelling there is pressure to always have the best time and always happy but that's not always the case especially when dealing with mental health. Give yourself those days off, allow yourself to feel things just as hard as at home. If you need to stay in bed all day that's okay, you still made it there which is huge and you're in a new place it can be very overwhelming. 

I hope that was useful, let me know if you have any more tips for everyone!

Ruby xx

INTERRAILING TIPS AND TRICKS

Hey guys!

Sorry it's been a while, but I've been asked by several people to write down my interrailing tips and tricks, I will be going for the second time this Summer and after lots of hours of planning I can share with you how I do it and what I've learnt.

Planning:

The first thing you want to do is make sure everything is safe and sorted before you go, one way to do this is to photocopy important information in case everything gets stolen or goes missing, it is always good to have a second copy to help you get home.

This means you will book the right about of nights in one place as days and nights can sometimes get confused if you can visually see it.

Passes: 

When booking your pass, make sure you are getting the right one for the amount of time travelling. For example if you are only actually travelling on 7 or 11 days, there is no need to buy the whole months worth pass unless you haven't planned your locations and just want to jump on a train when you want. This is the more expensive option but gives you the most freedom.

Accommodation: 

Hostels are a great way to go if you are travelling alone, however now places have overtaken the price of a hostel. Airbnb is now the cheapest option, especially in a group as you can pay less than you would be a bed in a hostel for a whole apartment in a city centre. Being further out of the city is not as bad as you think and could be a cheaper option, it's nice to use a countries public transport and you get to see more of the city but check the prices as it could work out to pay more to be closer in if the transport is expensive.

Airbnb:

When booking always make sure you have checked the reviews, although everyone has to have a first guest I would only book places with multiple positive reviews to just feel more secure. You can always select super host if you want to be extra secure as they are approved by airbnb. They will take the money out of your account when you book, but they only give it to the hosts after you have stayed, so that if you cancel or the hosts need to cancel airbnb can just give the money back with no need to go through hosts.

Budgeting:

Your pass includes one journey in and out of your starting country, so have a look at what option is best, that includes ferry's and trains but not flights.

Food budgeting will depend on where you are staying, if you are in a hostel or Airbnb there will be a kitchen and you can buy food and cook it there which will obviously be cheaper. I budget about £5-7 a day which doesn't sound a lot but will be more than what you spend on a normal day in England. For travelling, buying a bread roll and fillings is cheaper than buying multiple sandwiches so I would suggest doing that for trains.

Train Reservations:

Certain trains need reservations, this is a cost on top of your pass that reserves you a seat and you won't be able to travel without it. If you go onto the interrail app or online they can tell you which trains require reservations and you can book them in advance on the site. If you do this you have the security but they do charge 8 euros per train booking on top of the reservation cost, so you could risk it and get the reservation on the day you are travelling but may not have a space on the train. If you are taking a night train the cost will depend on what room you have chosen, I have never done this as I would only feel secure if you could lock the doors as I know people have got there belongings stolen from sleeping on trains.

Insurance: 

When travelling it is always best to have insurance, however you will only get money back if your claim is over £100 and its a huge process to go through if you have a claim. They don't want you give you the money back so they make it difficult, so I would suggest only insuring items such as phones or cameras as you will still be able to use your EHIC for medical emergencies out of England.

Packing: 

There are a few items I took away the first time which I don't think I could have done without. The first being sandwich pages, they became so useful for left over food, shampoo leaking, dirty underwear or mini bins. They don't take up much room but are defiantly needed. The second is a pillow case, they pack up very small and are nice to have if you are staying somewhere which doesn't look the cleanest. If you don't use it, they can always be used for a laundry bag. Wet wipes are also such a good thing to bring as you might want to freshen up after a long train, or need to wipe your hands clean if eating on the go.

Language/customs:

When going to many countries you are not expected to know every single language, but it's good to learn a few words from each so you show you are trying and not just expecting everyone to know english. Good words to know are hello, please, thank you and sorry. Remember what is respectful in different countries, if you are going into a church or abbey, you will usually have to have your shoulders and knees covered as a sign of respect. If going to a mainly muslim country it is nice to bring a scarf in case it is respectful to cover your hair, it is always better to have it packed just in case.

I hope that was useful! Leave a comment if you have any questions.

Ruby xx