Advice or Any tips

[Clarkyy__x]

Hiya, I've recently started my journey to be diagnosed with autism and ADHD, I'm waiting for some specialists to get back to me but ive already been waiting 4 months, I know it takes a long time but I've generally been driving myself insane, I'm getting really irritable and I'm really struggling, I'm exhausted all the time where my masking is so high.

I was wondering if anyone has any tips or advice as to how I can cope or suppress anything, if you can take anything to calm myself down or if anyone sees anyone, while I wait to be contacted, any tips or advice would be so so helpful thank you. Xx

[Tronsformer]

Hey there,

I was in the same boat as you almost 2years ago. And I’m still waiting to be diagnosed! As in waiting to see a professional to assess me.

So I know exactly the emotions you are going through. As corny, cliche and counter productive it may seem try and be patient about the entire process. Because if you are in the UK its going to be a very long wait.

One thing that really helped (and saved me) get over the wait and lack of knowing how long it takes was to keep learning about the condition and piecing things to together myself. Buy my aha moment came when I attended the Autism Show. There I was able to speak to someone qualified about my concerns/worries and basically to see if I’m autistic.

Whislt they couldn’t diagnose me on the spot it was all but evident that I was autistic based on their interactions with me and them confirming I have clear traits that associate with autism. And what was most telling was whilst I went in expecting I need to be examined like a cold and clinical way. Yet just by the clinician talking to me in a regular conversational way and asking seemingly normal questions showed off things about how well I can/do mask and speak in a relatable way about the effect that has etc.

So to conclude they told me as an adult I can self-diagnose and didn’t need to be assessed for autism. Yet it was clear to them that I needed to know ‘officially’ rather than diagnose myself and move on.

And from that point on I’ve accepted I am autistic and lived my life for a full year as such and its really helped my piece together things whilst I await diagnosis. Even if diagnosis comes back that I am not, it doesn't matter because up to that point like yourself, I was really confused, worried, restless and didn’t know where to turn. Yet accepting (almost) within has been so powerful.

I still have very bad days but in those days knowing that ‘its my autistic mind’ that is getting me hear helps me take small steps to get back out or at least stop me from resorting to damaging behaviour.

I have considered private assessment for the speed and closure yet the clinician advised me that a) if you need assistance from your local authority, educational body, work etc they may only recognise a government assessment. So this is something to consider. b) very expensive if you don’t need in an official capacity.

Another thing to notes as of last year the waiting time for children who are more likely to be prioritised over adults is 3 years in the uk. I’ve waited 2 as an adult so far.

Final point though, I’d advise for situations like work, education and even your closest people, it is best to be open to those where you feel confortable about what you are going through, why you want to be assessed. But also to ask for support, understanding or guidance on things you find difficult or a struggle.

I wish I had done that at UNI as I struggled with tasks and autonomy and organisation. If I had known back then I needed help with that I could’ve had help or a smoother experience. Same for work, being open about issues I can’t fix for the life of me, being open about that can help. But equally it can be a bad experience too with people who don’t, can’t or won’t understand.

For example, in my line if work I meet a lot of new clients, yet I hate small talk, struggle with electronic communication the most and struggle to understand things without context (emojis for example !) in the past it has been bad but since I accepted I am autistic I have begun to tell clients upfront, like ‘hey btw I am autistic - all this means is I might as more questions than normal so I can fully understand what’s needed etc’. And this helps set the tone and makes me feel way more comfortable and to focus on my job.

And this is a method I learned at a talk in the Autism Show conference. A scientist who has autism knew for about their autism ie was diagnosed at an early age i believe and as a result could ask for support from their uni and now work. It might be a oerfect scenario as I know other folks here its been difficult to get that help

Though recently i worked with a company who said they were super inclusive said all the right things about not worrying aboout anything and that they will accommodate or whatever. And in turn they turned out to be worst clients I’ve had to deal with. So for some its all talk or simply not fully undersanding. Now this has been a rarity but something to bear in mind.

Either way if you accept or live like what you think you are going to be diagnosed with with now or wait until assessment its going to be a journey either way. If youbare diagnosed remember this has been with you every day of your life so the sooner you make adjustments the better right? If the diagnosis is negative then your search continues to find yourself and get understanding and help you need which is the ultimate goal so ve sure to continue that.

And a point about the Autism Show conference, there’s a lit to read online but seeing people in person, hearing their experiences and learning more about the spectrum was eye opening. And more educational then reading up. I highly recommend it if there is anything ear your or you can make the arrangements to travel to one.

All of this is a journey and the stage you are in feels like its all stopped as you await further information/instruction. But take it as a chance to prep for the rest of your life and learn truly about who you are, your super powers your vulnerabilities and obtaining the tools to navigate life.

Its going to be emotional, confusing but ultimately the most freeing stage if your life.

[Clarkyy__x in reply to Tronsformer]

Wow that was all so perfectly put thank you so much, So you said this stage is going to be confusing and emotional and you are very much correct there... Is there anything you can take or do just to ease the irritation on this, I have already self diagnosed myself if I'm honest, I just generally feel I'm going to lose my head if I keep going round in circles like this, I truly do need someone's help I keep getting myself in panicking states or zoning out for hours on end Xx

[Tronsformer in reply to Clarkyy__x]

my strategy is more avoidance and prevention. Like I didn’t realise how sensitive I am to noise, so structuring my surroundings the best I can. I bought a bunch of fidget toys to take iff the edge, I enjoy the crafts music art and get lost in those almost daily. I’m fearful of medication (negative history of dependence and addiction in my family) so I don’t drink or take anything recreationally or otherwise so in places like gatherings parties etc its a struggle. Buuut knowing what it is the cause of it helps me. Like if I sprain my ankle I know there is no point trying to sprint. So I treat places where I feel awkward etc the same. Just try and get over it.

Another thing - I get very low and depressed and time and fall into ‘dark places’. I’m lucky I have someone to kind of speak about this but recently I oddly found that taking a selfie (i hate selifes btw) of my in that moment as a reminder of that low point and that I don’t want to go back there. I also dump all those thought and feelings in my notes app or on here at times to empty the cup so to speak.

Other things that help me are exercise in the morning and good sleeping pattern but this hard for me to maintain but when I do its like a cheat code. i don’t care about getting a six pack but more some the mental benefits. Its like a sedative.

And speaking of those I tried things like valerian root, st john wort calm tablets. They do not help and just make me sleepy.

[Honey52 in reply to Clarkyy__x]

Hi

I think you need to remember that Autism does not cause anxiety, it is caused by your response to the situation that you are in. You are feeling anxious the same as anybody waiting for any potentially life changing diagnosis. Therefore try stress management - NHS website, advice from GP, meditation etc. can all help.

[Bootsie1]

Ask your doctor about beta-blockers. Their use for anxiety is considered “off-label use.” That means beta-blockers aren't specifically intended to be used for anxiety, but they can still be legally and safely prescribed for that use.

My son has had good results using them to come with school related anxiety. They basically tamp down the physical symptoms related to the fight if flight response. Also, no abuse potential..

[Bee-bop]

Hi there, it can be frustrating waiting for your assessment and I am thinking you must have been referred through your GP or something? You can also ask them about a referral for a psychological therapist to help and/or contact the autism society helpline for advice/support.

My youngest daughter was seen by CAMHS (children and adolescent mental health services) and referred for testing from them whilst at high school and the assessment was roughly 3 years wait but, we had regular therapy sessions at least. I think this helped but, my youngest had support put in place regardless at school so the actual diagnosis was not as big a thing for her? She was on a reduced timetable etc due to her difficulties.

My middle daughter was referred as an adult last year and had he assessment in less than a year but, was told it was Dyspraxia, Dyslexia and Dyscalculia. It has very similar traits which I wasn't aware of. I believed dyspraxia was a physical condition of poor coordination but, it is also psychological and this made more sense regarding my middle daughter. So, she was not further assessed for Autism and ADHD which her referrals were for. I wonder if in your area there may be a similar quick first part of the assessment process for adults. It might be worth asking your GP regarding this.

For both my daughters they get similarly overwhelmed and need time out to recover. Both are noise sensitive and use either ear phones or ear plugs to help regulate. Both need to rest after doing things and social situations take a lot of energy. My youngest used to take rescue remedies pastels to help when at school/college and felt they helped a little. We also have guinea pigs that are used therapeutically to help calm her which definitely help stroking them helps reduce her overwhelm and brings down her anxiety. Plushes also help as the materials and softness are calming. My middle daughter has a weighted blanket and plushes. Also lowering the light in the room helps fof both of them.

It may be worth you thinking about what helps calm you. Are there any sounds that help, videos, books or materials that work for you? This is to counter the exhausting feeling from , as you say, masking all day. If you imagine doing things needs to be balanced by a need to not do things to re address the balance? So time away from others is really valuable to reset. Also, make sure you drink enough. This may sound random but, I know of a few people on the autism spectrum who just don't like drinking and/or eating outside home and dehydration leads to feeling more exhaustion and/or headaches.