AMAA: Reframing Autism

First of all, it’s never too late to learn you’re Autistic: I was 39 when I got my diagnosis! So I would certainly encourage exploring this further if that’s what you want to do.

Your GP is a good starting point for this discussion. Explain to your doctor some of the reasons why you believe you might be Autistic, and why you are seeking an assessment. They can talk through your options and refer you to a clinic that specialises in adult Autism assessment, or you may already have ideas of where you’d like to go. Assessments can be quite expensive so be sure to ask about the costs involved when booking your appointment. For your assessment, you will need to complete some forms and take part in a lengthy discussion with a psychologist. Some assessments can be completed within one appointment; others require more than one appointment. Also keep in mind that the requirements for an Autism diagnosis do vary, depending on the practice you attend and also your state.

Unfortunately, many Autistic people are not able to attain a diagnosis for a variety of reasons, including social, cultural and financial factors. Others choose not to go down the formal diagnostic path but embrace that identity as their own. At Reframing Autism, we believe that self-identification is as valid as an “official” diagnosis.

@Lost_Space_Explorer5  I personally think it's really important to highlight the diversity of experiences in Autism. A lot of people think that Autism looks like one thing, but everyone is different.
I can relate to what you said about your brother. I feel similarly with my sister sometimes. She has severe functional neurological disorder, but many people are not like her. I read a lot of recovery stories from people with symptoms which aren't as bad as hers but I would like to hear more about people who are more like her and how they manage and cope with the condition.

That's so true @Lost_Space_Explorer5! In some ways, if she had something like a stroke it would be easier to treat and that's what professionals have told us, although strokes can be really devastating and I've worked with people who have had strokes.
She is able to tell her story but I don't think that severe FND is represented as much as less severe FND. I think most stories I have read are from people who have recovered or have intermittent symptoms. It is also rare to find people with her specific combination of symptoms because FND can involve a range of different issues.

Also, recognising that this chat might bring up some feelings for you also @WheresMySquishy so please take care of yourself. And as always, thank you for being your wonderful self and sharing your experience to support the community.

Another thank you to the user who raised this question. Let's hear from @GinnyRA 

What impact do you think ABA based therapies have on autistic mental health and general wellbeing?

The Autistic community has long argued that ABA and other intensive therapies that attempt to “normalise” Autistic people or suppress Autistic behaviours have a highly detrimental impact on Autistic mental health and wellbeing, tacitly and explicitly communicating to Autistic individuals that non-autistic neurology is superior or even preferable to an Autistic one.

There is now emerging evidence to link exposure to ABA and other “normalising” interventions with posttraumatic stress symptoms (Kupferstein, 2018; 2019, for anyone who likes a citation!). In fact, that research showed nearly one in two Autistic individuals exposed to ABA presenting with PTSD, and with extreme levels of trauma severity in half of these affected individuals. Autistic adults have a 41 per cent, and Autistic children a 130 per cent, increased chance of meeting PTSD criteria after exposure to ABA.

Reframing Autism takes a strong stance against ABA and “normalising” interventions. You can read more about this in our position statement.  

https://www.reframingautism.com.au/position-statement-on-therapies-and-interventions/

I did some research on ABA @GinnyRA and it really broke my heart. This goes back to what we were chatting about before. There should never been a societal normal for anyone to aspire to. Differences should be celebrated. Thank you for sharing Reframing Autisms stance on this

@Bre-RO, now you know why I said there would be no fence sitting when it came to ABA!

There should be no sitting on fence with such a cruel practice and I'm grateful that I have had the opportunity to learn more @GinnyRA 

I'm sorry your brother had that experience @Lost_Space_Explorer5 that is terrible, nobody deserves that. 

Yeah 😞 @Bre-RO I don't think I quite understood how serious it was back then. I was just a kid and thought it was funny that my brother cried every time we got suitcases out or any time we mentioned the name of the camp...  because he NEVER cried otherwise. So greatt I made fun of my brother for a horrible horrible experience 😞 I was a horrible kid. Ughh. Now I know better but still I cringe 😞

Oh I'm sorry to hear that there's still so much uncertainty @WheresMySquishy 😞 It sounds so stressful and time consuming 😞 Yeah I think even old carers feel a similar way too 😞 Even when it's parents of kids. The things I've heard my mum say, I shouldn't repeat here, that she didn't mean but came out of frustration and exhaustion 😞 I think it's normal to feel a lot of mixed emotions with being a carer

This is a good question to follow on with @GinnyRA 

Do you know of any coping strategies or mental health treatments that are more likely to be effective for autistic people?

The efficacy of coping strategies and mental health treatments can be highly individual, but there are some particular ones that are recognised within the Autistic community as generally helpful.

Visual supports are a simple way to support executive functioning, and I find these helpful in staying on top of my work and life admin. Sensory tools, such as weighted blankets and stim toys, can be incredibly useful to help an Autistic person to regulate. Occupational therapists are wonderful problem solvers and can provide invaluable support to Autistic youth and adults in navigating their daily lives.

It is well acknowledged that Autistic people can be highly creative, and art therapy may be a helpful way to process emotions and experiences. Many Autistics also feel strongly bonded to animals, so animal-assisted therapies, such as equine therapy, may be beneficial. In additional, many Autistic adults find assistance dogs helpful for anxiety navigating public spaces and sensory support.

Another really important aspect of maintaining my wellbeing is having strong online connections with the Autistic community, and it is known that Autistic people who have strong connections with Autistic community have improved self-esteem and wellbeing and lower anxiety. I have many online friendships with Autistic people, several of whom I have never met, but who provide connection when I need it. The ways in which we socialise may not resemble the usual, non-autistic ways of socialising but they’re just right for us! A funny meme can go a long way when your spirits are low. There are also a couple of online Autistic spaces which have provided me with immeasurable support through tough times.

Yes! Allowing myself time to stim rather than getting frustrated with myself for 'not getting onto work' makes me feel more productive. I also love the point about animals! I definitely think animals should be implemented more in all mental health spaces lol.  Irrelevant but my cat sleeps on me every night, it's like an extra warm weighted blanket (which I already have, haha).

A weighted blanket + a cat to sleep with sounds amazing @Hozzles 

I have to go now, but I look forward to reading this chat later.
Thanks for this AMAA @GinnyRA! 🙂

Thank you so much for stopping by @WheresMySquishy hope you have a lovely evening 🙂 

Let's get into the next question: 

How accessible and helpful do you think the mental health system is for autistic people? What does it do well, what could it do better?

Okay, I'll admit I found this a really difficult question to answer.

I think it’s important to acknowledge the strong points of the health system that we have here in Australia, which for the most part offers excellent quality of care, comparatively low waiting times and specific mental health programs that make treatment more accessible and affordable. There are some aspects of our health system generally that could work so much better for Autistic people, such as phone-only booking systems, noisy, crowded waiting areas, and poor knowledge of Autism among medical and support staff.

Regarding mental health services, I recognise that I am in a privileged position, having accessed private psychologists and psychiatrists from my late teens onwards, while many others are dependent on overstretched public services. At the private eating disorder clinic I attend regularly, I feel that I am understood as an Autistic person when my psychologist communicates with me clearly, forewarning me about changes within the practice or how she wants us to work. She encourages me to stim because she knows it helps with my nerves and also helps me focus and offers stim toys. She also follows up with me between appointments when I have forgotten once again to book appointments due to relatively poor executive functioning.

One area where I feel there is much room for improvement is within the hospital system. Hospital environments are highly stressful environments, with significant sensory and social challenges, and Autistic people often find that their sensory and communication differences are not understood or recognised within those environments. Not long ago, I accompanied an Autistic friend in mental health crisis to Emergency. It was evident that the environment was taking an enormous toll on her at that point in time, but no accommodations were provided.

Another weak spot is the care provided when a patient has a complex presentation, e.g., a young trans Autistic person who has significant mental health issues. I am aware of numerous young people who have “pinballed” around the mental health system, with no professionals wanting to take charge of their care because their needs are not straightforward.

Ultimately, I feel that staff throughout our health system would benefit greatly from more training – provided by Autistic people themselves – on how to support Autistic people in their care.

Oof, I so relate to that experience of being 'pinballed'. Again there's that missing middle, not sick enough for hospital, not well enough just for fortnightly therapy. It's a tough place to be in and I hope it can get better.

I feel like it's not just an Australian issue, it's something everyone everywhere can do better. A few years ago I attended an international conference for youth mental health and I felt so frustrated in the lack of discussions about autism/ neurodiversity. Hopefully I will attend again one year and see lots of discussion! I feel like tags like #actuallyautistic and things like it are trending more often on twitter and things lately... or maybe it's just the people I follow hahaha

I really hope neurodiversity is spoken about more often and in an authentic way too @Hozzles we can always lead the change and bring it into focus when we feel it isn't been spoken of. I think you would be amazing at that  

I'm going to keep the ball rolling so we can answer more of these questions @GinnyRA 

What is a really useful way for you to release emotions that make everything hard to deal with? Asking because I don't have any that seem to help, and it would be helpful at school during exams!