Is It Worth Getting An Autism & ADHD Diagnosis

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Is it worth getting an autism or ADHD diagnosis (or both)? It can be really difficult and time consuming to get assessed for autism or ADHD and in this video I'm discussing those challenges and whether ultimately it's worth the effort required to get assessed and diagnosed.

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A little bit about me:
Hi I'm Purple Ella and my family is an autism family with three out of five of us on the autistic spectrum. I also have ADHD and connective tissue disorder (hypermobile Ehlers-danlos syndrome). So life can be a challenge but also a lot of fun.

[henryviiifake]

07:24 Being denied an assessment because you "have [a few] friends and a [full-time?] job" is like denying a wheelchair user prosthetics because they're a paralympic gold-medallist. Or being denied an MRI/CAT-scan because your cancer tumour isn't obviously visible yet. 🙃🤦‍♂️
Whoever came up with that decision should be sacked.

[joleedavis]

I’m at that weird limbo point where everyone around me agrees that I’m autistic, my therapist agrees I’m autistic, and I know I’m autistic. But people around me have been asking “but why do you need a diagnosis? You seem to be doing fine?” And the money to do it so much and everyone that can diagnose me is so far away. I’m not sure what to do

[jamesfennell]

I was diagnosed in September 2020 at the age of 30, Now I look back at life and think that would have been useful to know earlier

[lizabee]

Every quiz I have taken to see if I adhd (inattentive) shows I tick most if not all of the boxes. Then, why do I feel ashamed, and like I would be lying if I ever pursued a diagnosis? 😅 My family will just laugh at me if I raise the issue, and I worry if I managed to even get an assessment they would dismiss me. Ohhhh it's not easy! 😄 Love your videos, they're super informative and easy to understand 💕

[MrsTikiGod]

I'm a female adult in the USA. This hit so hard! I was so overwhelmed at the truth here I kept pausing to compose myself. I've always had physical and mental issues. What you explained here was my experience with all diagnosis that are even slightly subjective.

[nfffan]

unfortunately, a doctor ignoring signs is something that my family is quite familiar with. I am 33, and am of the strong belief in my point in life that I am on the autism spectrum. growing up, it was not too uncommon for, when my parents brought up an issue that they had concerns over about me or one of my brothers and the doctor saying something along the lines of "that's normal, he'll grow out of it" or something like that... One issue for me in particular that the doctors ignored was that as a child, when I finally did start walking (my mother tells me I was a late walker) I did so a lot on the tips of my toes. The doctor said I would grow out of that, 3 decades later, I still walk like that, especially in the home setting. it's actually my experience that they ignore as much as they can

[kaciewolverton]

As an adult it seems like the main advantage is for access to medications. At least for me, I've done the work of creating coping mechanisms, figuring out social skills, and can read up on these topics myself. A diagnosis would relieve some self-doubt, but I don't know that that alone would be worth the time, effort, and cost of pursuing a diagnosis.

[Dulcimerist]

The ADHD diagnosis was helpful for me since it also turns out that I have hypermobile type Ehlers Danlos syndrome - the ADHD medications Guanfacine and Clonidine are actually two of the top medications for treating EDS dysautonomia/POTS, anxiety, sleep issues, and migraines.

[PostTraumaticVictory]

I’ve been asking myself this question a lot lately, can’t wait to watch this video! 🤗

[abbyapplebee]

This is happening all over the world, it's incredibly frustrating that ASD is still so misunderstood by health professionals and schools. It is good that people like yourself are doing things to try and help create awareness. 💚

[manimann]

I’m 40 years old and was diagnosed with ASD on Sunday. My entire life now makes sense! Thank you for your videos.

[meme]

Thank you! I don’t think I have the fortitude to pursue diagnosis. Two adult children are dx’d ... and I’m managing okay with help from people like you😘 My alcoholism, under control now for five years, made things so much worse 😞 and predator “people” are partly to blame. Yes, knowing earlier in life would’ve made a difference! Again, Thanks Ella!

[Bexyboo]

I actually also believe I have quite a lot of Autistic traits myself - mostly sensory issues, which I have become even more aware of now (I'm nearly 35) as I feel others do not react the same way to many things I do. Just a quick list of a few things for me:
- Mud phobia - I can get real anxiety / stress / panic / fear response if I have to walk through (sloppy) mud and having muddy footwear.
- Overly sensitive to sounds and smells that are not usually around.
- Overly sensitive to temperature fluctuations and especially can't cope when it's too hot.
- Overly sensitive to bright lights (I hate ceiling lights on).
- Clattering/bashing/banging items, such as plates, cutlery, glasses and if people are heavy handed shutting cupboards/drawers/slamming doors etc...
- Change - My mum likes to move the furniture around a lot and it can really make me feel stressed/upset/annoyed/angry as I'm not used to it. Can take a few days to get over it.
Also feeling lost/annoyed/upset/ if a plan that had been set for the day suddenly gets changed or doesn't happen for no real/good reason.
- Clothes - I have what I would say is a BIG issue with clothing, I find it very difficult to wear different things. I keep buying the same items and when no longer available, scour the internet for people selling them second hand. I will wear them until they literally fall apart and even then try to patch them up and continue to wear them. I don't enjoy washing them either as they don't feel the same on straight away after being washed.

Just a few of the things, but I feel they are not very 'stereotypically normal' (?)

[rachaelward]

I was dignosed with high functioning autism in May last year at 36. My Mum was asked when I was around 3 or 4 if I was autistic and she said I was under a pediatrician who hadn't said anything about me being autistic so it was left.
When I was 19 I started reacting to loud noises, but I put that down to anxiety I have not knowing anything about autism. Then when I was 36 I had alot of trouble how to take others I thought they meant sometbing entirely different to what they actually meant and became frightened in busy malls. For example, just after Christmas I had a meltdown at my public library. When I recovered and got over the embarrassment, I thank the staff who helped me only to be told "you need to work on that." This really upset me and I explained it was a very recent diagnosis, I'm still working out how to help myself. She was really good and suggested which I have done, I make like a card with how to help me which I can show. Before the diagnosis I would of burst into tears feeling not understood.

When I finally got the results of being assessed last year after a slight delay with covid-19, I was so relieved I burst into tears. I finally 36 years later had a answer!

[julicastillo]

I’ve been thinking that there’s a chance I might be ADD, but I’ve been hesitant about seeing a doctor for assessment because I feel like I’ll be told it’s in my head. The biggest flaw a doctor can have is not believing in the patient and telling them that they’re imagining it. I do know that some people really do make things up, but some of us don’t and NEED help!
I’ve had experience where doctors would tell me basically “it’s in your head bc I don’t see anything wrong” for something that was a physical issue. For years I had really bad and progressive knee pain and swelling which gave me chronic back and hip pain. I would be in tears. But for 4 years I was told, “you’re too young to be having these kind of problems (15-19y/o) and the x rays don’t show anything, so you’re physically fine.” THEN WHY HAVE I BEEN IN AGONY IF IM “FINE?!”
Wether it be physical or mental/emotional, if you’re seeking help sometimes you HAVE to be annoyingly persistent to get what you need. That’s what I had to do. Last doc shook his head saying he didn’t see the need for it since I looked fine, but that he could order me an MRI. I said HELL YES. Two weeks later he calls, “please call back ASAP. We need to discuss your results and corrective surgery as you’re wearing down the cartilage in you knees.”
Don’t ever back down from a doctor’s declaration if you KNOW it’s not right. You may not know the problem exactly, but you’re the one who lives with it, so you know it’s not you’re imagination.

[bluewrenbirdie]

My GP agreed to a referral, told wait time is 2-3 years and to expect that to increase due to Covid delays. And good chance that as an independent adult, they'll reject moving forward to assessment. But at least I now have a GP letter which while not a formal diagnosis, should help me to start accessing workplace support which was the main reason why I wanted assessment.

[GBpoketto]

i'm so thankful to hear that you support self-diagnosis; a lot of professionally diagnosed people tend to think self-diagnosis isn't valid, and it's very frustrating. i have known that i have adhd for most of my life, and then discovered i am autistic as well with a lot of supporting evidence coming from my documents of my childhood, and i am trying to pursue an adhd diagnosis to get medication because it's just so frustrating living like this.

i wasn't planning on telling the guy about my autism, but then it got brought up and i'm really hoping it doesn't interfere with my chances of getting diagnosed with adhd because i wasn't really planning on having my autism diagnosed, at least not yet. and then there's the nightmare that is insurance. i'm hoping things go well and that all my anxieties aren't going to end up being true.

[kaileesentance]

I am actually extremely lucky and this video cemented that. While I wasn't diagnosed until recently (20) I didn't have to push or fight. My psychologist (also a newuropsychologist) actually questioned in my first session if I was on the spectrum and when I said I was never tested recommended testing. Ultimately diagnosed in about 8 weeks of work/meeting and has really helped me understand why I react in certain ways (I.e. why change freaks me out so much, sensory issues etc). Very grateful 🙏

[jlbeeen]

I was literally, "I don't think you have ADHD, it seems more like autism, but you paid for the ADHD test, and I don't want you to have to pay another $2000 for the autism one, and you did technically meet the criteria, I just think your ADHD traits are actually chronic fatigue mixed with autism." She also said not to take meds unless nothing else works, but I'm glad I tried meds, even if it was a few years later
But I'm pretty sure I have the whole suite of ADHD, autism, POTS and EDS (waiting on EDS for a specialist, but I have hypermobility and joint pain), on top of allergies and food intolerance. I'm really glad Moo Free exists and supports autistic and disabled people, while making the best dairy free chocolate, but getting help in my day to day life is hard because I have to explain all my symptoms rather than having a term to say what I'm dealing with. I have to list my sensitivities and sensory needs, my physical access needs, and executive dysfunction all separately to profs when getting extra time, and it's exhausting just to self advocate to make it through university. Thankfully I did have some help from an amazing advisor. I never had that in grade school since I went to a tiny private school where half my class was in some way, neurodivergent, disabled, or chronically ill, so the teachers had to deal with all of us regardless of diagnosis, so basically they gave everyone accommodations. It was nice, but didn't prepare me for the chaos that is having new profs form almost each class, some of them being extremely ableist.

[WoohooliganComedy]

Thanks, Ella! 💖 Yeah, I've read that book where people tore out a bunch of pages... I was in my early 30s when I got my diagnosis and we've dealt with a bunch of the same kinds of hurdles getting my kids' autism diagnoses. My oldest daughter, Alex, still doesn't have one but definitely should. When we tried to get the school to assess her, the school psychologist was retiring and literally taking her as his last task and came back and said "nope, she makes eye ccontact", like, I MAKE EYE CONTACT AND HAVE A DIAGNOSIS.