Being a neurodivergent family has its challenges. For us, personally, the biggest struggles are society’s lack of understanding and getting the support needed. Neurotypical people are often somewhat unaware of the range of difficulties faced by autistic people (and those with other neurological differences, such as ADHD) and what would actually help us in daily life. Many people already have their own perception of what these things mean, often from unhelpful stereotypes portrayed in the media, and they don’t stop to listen to those with lived experience of it. What I hope to achieve by writing this post is to get across that neurodiversity is far more complex than it may seem on the surface, or looking in from the outside, and the best way to understand better is to really listen carefully to those living it.
“If you’ve met one autistic person, you’ve met one autistic person”.
The now famous quote by Dr Stephen Shore tells us so much. The word autistic is too often loaded with bias, prejudice, or ignorance. All of which we must work to dispel, in order to make life better for neurodivergent members of our society.
The idea of there being an autistic spectrum can actually be quite confusing for many, causing common misconceptions like ‘everyone is a little bit autistic/ on the spectrum’ (no, they are not). Or that there is an overly simplistic sliding scale of autism from mild to severe. The reality is far more complex; each autistic person has their own unique struggles and challenges – just like anyone else.
There are some common misconceptions though; lack of eye contact, expectation of being non verbal, and no empathy are a few I have come across frequently. Another is assuming all autists have a special skill. Not every autistic person has a special talent or skill; it is true there are often specific areas of deep personal interest, but these can also change too. Autistic people may be hyperverbal. Eye contact is often forced and uncomfortable, but it is taught to be the norm so happens anyway (it is also a form of masking, I will get on to this soon). Some may struggle with too much eye contact instead of too little, as it simply doesn’t come naturally. Autistic people certainly do have empathy but it may be expressed differently than neurotypicals.
Another thing that can cause further misunderstandings and misconceptions, in my opinion, are functional labels. Say someone is considered to be high functioning autistic – that’s all very well – but based on what; verbal communication? Social skills? Sensory processing skills? Ability to fit in with neurotypicals? What type of environment is the person in when their level of functioning is decided? When you start to unpick what it really means to be autistic, and the huge variety of challenges faced, it starts to become obvious that the criteria for such labels is far too narrow and simplistic.
For example, sensory overload can seriously impact my ability to function, I struggle with telephone calls due to auditory processing issues and social interactions can be draining. In other contexts, I might manage absolutely fine but someone else may find things difficult. None of that can really be explained by short descriptors or functional labels.
From the outside, it can also be even more confusing for neurotypicals to understand the broad spectrum of traits associated with autism, due to autistic people ‘masking’. It is common for children to mask at school. But it is also especially the case with older generations who are undiagnosed, or had a late diagnosis, so have spent their entire lives masking. Here is the thing though; masking is exhausting.
What Is Masking
Masking is essentially trying to act like a neurotypical person and hide autistic traits. It is about trying to fit in. It happens because it is what society historically has expected, and often still does. The problem is, as I said, masking is exhausting. But more than that; it is unhealthy and affects wellbeing. It damages confidence and leads to low self-esteem. Furthermore it can create mental health issues; anxiety and depression for example, and other issues, such as chronic fatigue. Being ourselves, and embracing who we truly are, is important to our own wellbeing.
The Importance of Early Diagnosis
Getting diagnosed early is important in order to get support and understanding (in theory at least). Many neurodivergent adults today were undiagnosed or received a late diagnosis, which means a lifetime of masking and being expected to simply fit in, at the expense of our own health. It takes its toll; spending your whole life trying to act neurotypical, and not understanding why you don’t fit in is challenging to say the least.
These days, more children receive an early diagnosis, which is progress. Although sadly many still slip through the net until later on, or are stuck on long waiting lists. The fact is though, autistic children grow up to be autistic adults. That is a lifetime of understanding your own needs and how to manage them, as well as hopefully getting the support required to do so… or not. Same goes for other neurodovergent conditions too of course.
Unfortunately, I can’t say that the process of geting a diagnosis is simple. NHS waiting lists are usually several years long, for both adults and children. Some people therefore go private for assessment, but there are a few things to consider before taking this route. Firstly, research carefully and choose someone reputable, and ensure the diagnosis will be accepted by the NHS. Also, you may need to budget for any potential medication appointments before NHS will take over care (especially true of ADHD for example, but it goes for other neurodivergencies too). However, if finances allow, private psychiatry can speed up the assessment process and also offer post-diagnosis support too where needed. Getting an early diagnosis increases the chances of getting support and adjustments, but also helps with understanding generally too (both self and others).
How To Support Neurodiversity
The best way, in my opinion, to support neurodivergent members of our society is generally with raised awareness, increased understanding and offering adaptations that might help. This should occur in housing, communities, schools and workplaces, and public places; in other words, in all areas of life. From my perspective, this could include simple things like companies normalising the option of written communication rather than insisting on phone calls for example. Other people will have many other ideas, no doubt.
One issue with housing specifically is that private renting can be very stressful for neurodivergent families in particular; there are a number of reasons why this is. For an autistic family, here are just some of the possible reasons; lack of stability/ security (as landlord may not renew contract), frequently having to communicate with extra people (landlords, letting agents, maintainence people, and so on), anxiety about strangers coming into the home regularly for inspections, little choice as to when any work is carried out, lack of freedom to make own decisions about home environment, and (unreasonably) high expectations of presentation, to name just a few. However, perhaps the biggest one is not being able to adapt the home to suit needs, such as soundproofing to avoid sensory overload, for example. Sometimes neurodivergent tenants are refused modifications, other times they feel unable to even ask, for fear it may trigger any number of the above issues I just named.
This of course is just one thing that neurodivergent people may struggle with. But the example does serve to highlight the point that society in general could do alot more to support neurodiversity. And of course, it is essential to understand that different people will need different help.
Taking Care of Our Own Wellbeing With Our Neurodivergencies In Mind
All living things spend energy with every little thing they do. As I’ve grown more aware of the impact of being a neurodivergent family on the lives of all involved, one particular thing is very clear; it is important to spend energy wisely. How you do this and what it means to you might vary. If you are familiar with the concept of ‘ using spoons’ this is what I am talking about here.
It is important to manage yourself, your finite energy, and your own expectations (and sometimes other people’s too). If certain scenarios are likely to be exhausting and leave you non-functional, or take up too many spoons (even if it’s everyday things like phone calls) then the best thing for your health is to find ways to make it easier, or to ask someone for support, or avoid them if best to. In short, know your limits and be strict about setting boundaries around them. Protect your spoons and use them wisely. Being neurodivergent can be difficult, but understanding how to manage your own needs does help, as does support from others.
*This is a collaborative post