Q&A on being autistic

Autistic people either suffer from a terrible disability or are blessed with a superpower depending on which particular list of autistic characteristics, traits or even ‘symptoms’ are being used for reference. Where do you stand on this? How do we arrive at a definition of autistic which helps to recognise the traits and characteristics which are at the core of who the person is as distinct from the symptoms of psychiatric and/or medical conditions?

Victoria: I was originally diagnosed as Aspergers Syndrome, only 3 years ago. This is still a current occurrence, this goes to the medicalisation of Autism implying that I am or have a syndrome. I now realise that 'being Autistic' is the right terminology for me and one that can more beneficially be applied to us autistics in all our different guises....

Dave: Prior to 2013 the diagnostic and statistical manual for mental disorders, the section devoted to autism was broken into various sub categories such as Asperger's syndrome and childhood disintegrative disorder. Post 2013, largely in response to the input of a panel of autistic people, all the previous sub categories were rolled up into one overarching diagnosis of Autism Spectrum Disorder. My view, and that of an increasing number of autistic people, is that there is no such thing as a 'typically' autistic person. We are all uniquely autistic.

Moderator: Thanks Dave. What do you say if people ask if it is 'correct' to describe people as being on the 'spectrum'?

Dave: I prefer being referred to as autistic as I accept that as being a positive whilst acknowledging that certain situations may pose challenges if adjustments are not made for me. A lot of the more convoluted labels have originated in the idea that being autistic is something tragic which cannot be referred to head on. This narrative is beginning to change.

Victoria: Thanks Laura. I think that Autistic people will be picking their own labels, and that is ok. There are many reasons to leave the AS label behind, not least of all historical ties to questionable activities. I think also AS tends to be seem as linked to 'high functioning' autism, which is again a problematic concept. We can look at that one later, but in terms of how widely is this information known, I agree not that widely. There is a lot of work in empowering people with information, research and feedback from Autistic voices. This is why we at Autism Hampshire/@Avenues Group are so motivated to do our work in training.

Dave: Hi Bev. Yep we are our own version of normal.

Response: Hi Dave I hadn't realised it was you. ???? Seriously though if we didn't have Autism we wouldn't have most of our scientists, engineers and mathematicians. We've chatted to future employments for my son and they all say he'll fit right in as they are all similar. ????

Dave: Great to hear that your son is in demand. Hyperfocus leading to strong interests and thinking outside the box are definite assets whether you are in STEM, the creative arts, sport or any other discipline. Being able to bring concentrated focus to whatever fascinates has the potential to make all autistic people an expert in something providing the right circumstances are in place. It's important to acknowledge that for too many of us, life is such a daily struggle that these positive attributes may never have room to flourish. Hopefully as society gains better understanding more of us will thrive.

Response: Autism it has been a hard slog for both of us but perseverance and a local MP onside is key!! Unfortunately he has severe ADHD also which is the biggest issue and the biggest asset!!

Victoria: Thanks Jane. I think it depends where you go for a diagnosis. In the NHS it is unlikely to be the label given, although those that go private (out of necessity much of the times because of the huge waiting lists) ay still get the Aspergers diagnosis. Also, as this label was used a lot in no too distant past times, a huge amount of diagnosed adults and children will be living with this label for life. The term Autistic covers everyone who is Autistic and diagnosed on the relevant diagnostic criteria. Although our different configurations are a rich source of diversity.

Dave: A very pertinent question. This is a judgmental approach which is unfortunately still quite widespread. It is important to explain that all humans, be they autistic or neurotypical, respond to overwhelm, stress and trauma in the same way. The difference lies in what causes that stress and trauma in autistic people. What appear to be ordinary everyday situations and sensory phenomena to NT's may provoke fight or flight response in autistic people. The same hormones are released, the same physiological and psychological changes occur but we often are expected simply to 'suck it up'.

Are many autistic people simply inefficient, disorganised and lazy and incompetent or is there a core difference in processing that is being overlooked and not being accommodated?

Dave: Yes. At work, whilst there may be significant challenges, at least there is more structure and greater access to tools which create structure. At home we often struggle with balancing the need for recuperation and rest with the stuff that needs doing and might need to generate work like visual systems to prioritise and break down tasks. This relates to Monotropism or the rule of One Damn Thing at a Time (ODTT) as we tend to call it. It is a misconception that all autistic people are born with a brain which is innately good at systematising. I think those of us who are good at it have had the good fortune to encounter patient people who have taken time to collaborate with us to create visual ways of breaking tasks down logically and prioritising. We especially need such systems when stressed or overwhelmed.

Dave: To do lists linked to audio prompts such as phone alarms, Siri or Alexa are very effective. We often need more time to transition from one activity to the next so using several alarm prompts with appropriate 'snooze' gaps in between can work. Audio is generally better as there is less demand on us to constantly switch attention between our activity and checking a clock, timer or whatever.

Response: I tend to do lists but end up with a long list half done, might introduce timers to keep me focusing as well. I tend to get sidetracked a lot.

Dave: It is being increasingly recognised that there is a significant overlap between being autistic whilst having some characteristics traditionally associated with ADHD. I guess also that home can present a lot more potential distractions.

Response: That is interesting, I have always dismissed ADHD as my energy levels are extremely low, but lately I've seen a lot of ADHD and organisation adverts that made me wonder if some of my characteristics were more ADHD, but if it intertwine more with autism, feels like that makes more sense.

Victoria: Hi Therese I would recommend the article in the Guardian 'The sudden rise of AuDHD' this week which discusses the overlap between ADHD and Autism. There are various other resources, this is a great place to start. There are also diverse ADHD types, some of which manifest differently in terms of energy levels etc. Also the interaction between Autism and ADHD can skew the presentation of what might 'typically' be looked for in both areas...

Victoria: Thanks Davina. We run courses here at Autism Hampshire/Avenues Group that include monotropism in some detail. Monotropism is a huge element in Autism for most Autistics and a significant piece in understanding all the other variables and potential facets of an Autistic person.

Response: thank you will have a look. Also how do I get school to accept this help?

Victoria: There is also training for schools that we carry out. Honestly there is so much need for a better understanding of this and many things neurodivergent based. I would suggest training for them also. Either on one of our courses for schools or a bespoke package for all. I am sorry that you may feel that school are not 'accepting' this, it sounds tough.

Victoria: If you would like to book onto training or suggest that school do the same here is a link to our ticket tailor page: https://www.tickettailor.com/events/autismhampshire1

Dave: Alternatively you could contact trainingadmin@autismhampshire.org.uk for more info. Whether for parents or school the courses are fully funded and so free at the point of delivery. Hope this helps.

Response: That sounds great but unfortunately it will not happen as she is mainstream school an I have had to pay for everything so far.

Thank you. I have booked on for the course starting the 17th of April.

Dave: Pretty much everything. There is a danger that the rule of One Damn Thing at a Time only relates to tasks. In actual fact it refers to the difficulty we have whenever we are expected to process too many 'layers' at once. This could refer to an environment in which there are multiple sounds, smells, visuals etc. to deal with. It could equally refer to an interview situation where a panel of interviewers are firing questions, talking over and interrupting each other or sharing in jokes. The challenge for others is to try and reduce unnecessary layers of processing, present things one damn thing at a time etc.

Victoria: For me pretty much everything. As I become more aware I can recognise the impact better as I go through the day: sound, smell, proximity of people and other stimuli all influence how I feel. These create a ground zero for trying to do more than one thing at a time, as any task would be against the background of multiple things processing to begin with, which is more than one thing.

Why is it sometimes so difficult for autistic people to get the adjustments they need in order to access education, employment, services and community facilities and function at their best? Is there any legislation which covers accessibility and how does it apply to autistic people?

Dave: The main piece of legislation here is the Equality Act. Put basically, it's aim is to legally prevent any group of people being disadvantaged because of their particular characteristics. This applies to education, employment, access to services and/or community facilities. Autistic people are completely covered by the Act but in reality, due to the largely 'hidden' aspect of our differences, our needs are all too frequently overlooked or dismissed as we do not present an obvious visual reminder of those differences in the same way as someone using a wheelchair may. Nevertheless the basic question is the same. Does this service, building or system allow autistic people to function at their best or are they being disadvantaged in comparison to non autistic people?

Dave: In the absence of detail concerning what toolkit they are using I would simply say that any questionnaire is going to be quite generic in nature. If it hasn't been coproduced with autistic people many of the questions may be based on outdated stereotypes and be limited in scope. In any case it will only be a starting point and needs constant updating and reviewing. The process of formulating adjustments must be collaborative and the child must have access to someone they know and trust in whom to confide on a regular basis as to how they are experiencing particular situations and environments. As a parent you might be best placed to carry out this role but even so the way you glean this information is crucial as direct verbal questionning may only provoke defensiveness, or pat answers aimed at bringing the conversation to an end e.g. 'it's all fine'. Some form of diary detailing what went well, what didn't go well and why might be helpful. This could be hard copy or digital but must be quite specific and detailed as big open questions are problematic and difficult to process. So, for example, you may need to have some tick boxes in the 'why' section to focus attention on issues such as distracting loud noises, smells, visual distractions, unclear or difficult to process instruction etc. In my experience it is always better to approach staff with suggestions based on what works and doesn't work at home backed up with evidence from the child's own account of experiences at school rather than place all the onus on them to come up with the goods. I would also point out that up to date neurodiversity informed training is essential in laying the groundwork so that schools have a better understanding of why you are asking for particular adjustments. We deliver free training funded by CAMHS and HCC for parents and schools. More details can be found on our ticket tailor page here: https://www.tickettailor.com/events/autismhampshir... or you can get more info by contacting trainingadmin@autismhampshire.org.uk. Sorry for the delay but i am not a fast typer!

Victoria - Thank you Davina. Many possible ideas here. Firstly it could be that the interventions were not totally right in the first place. Time for readjusting them. Also, if the backdrop for school as in normal life outside school has changed, then the adjustments in school may need looking at again. These things are ever changing and evolving. If a child (or adult for that matter) is particularly stressed due to other variables, then adjustments may be less effective. Stress will shift tolerance in anyone really, autistic or not.

Maybe revisit the team meeting and discussion of adjustments that were decided on and refine/adjust, speak to your child as part of this. Making the adjustments and keeping an eye on them is great in itself, and so valuable.

Response: Thats great but what if you share what is working at home an school don't implement it so there is no consistency.

Victoria - Hear you. Consistency is certainly powerful. I wonder if they have told you why they are not allowing consistency? Although it is possible that some assisting strategies and adjustments may differ in different environments. School is likely to be very different to home. Maybe start with asking school for more info on things they are not implementing, or feel able to implement (I feel you may have asked that already), then try to find a middle ground? And explain this to your child where appropriate

Response: I'm up for trying anything the school want to put in place.