Seeking Guidance?

A family notice there are some concerns about the ways and needs of their child. They begin a process of identifying the needs and they investigate how to best support those needs. This (metaphorical) path leads to a point of being in a process where a potential diagnosis will (likely) be given for the child. As questions are asked and discussions are had between medical and educational professionals and the family, the parent begins to notice some common ground between the experiences of their child and experiences they themselves have had. That’s weird. For them, at the time, it can seem weird…but is it? Here are a few thoughts for your consideration.

There are many sources (you can look online for ‘evidence’) that suggest neurodiversity of all kinds can run in families and that there are hereditary links. ‘Causes’ (for want of a better term, because I see it more just ‘how I am’ as opposed to ‘something I have’) are attributed to biological factors, environmental factors and genetic factors. That all seems a bit wishy washy to me considering that nearly all things related to humans are a mixture of those things. I’d best not divert down that (as some might term it) rabbit hole and go back to where we were.

Are these potential genetic links around neurodiversity always known about ahead of a diagnosis process happening for a child in a family? Absolutely not. In fact, I would say they are mostly not known or even suspected.

Will individual family members noticed neurodiverse traits, or different ‘ways of being’, or difficulties for family members who have gone before them? Mostly, again I’d suggest, no. These traits (if they had been noticed at all) will have (often) been passed off as differences in personality or behaviours, which is also true. Irrespective of the presence of any neurodiversity or not, those individuals in the generations preceding us will indeed have had different personalities and exhibited different behaviours.

For families who are currently navigating a diagnosis process for their child, there is often limited awareness about the specific more common traits of neurodiversity further back in families. This is due either to the levels of these ‘traits’ being lesser than is now being seen in the child who is in the diagnostic process or will be because of a lack of understanding, education or awareness about such matters.

In many cases too, the undiagnosed/unrecognised neurodiversity will have negatively impacted the lives of those further back in the family line (and those around them), but as with anything else (related to neurodiversity and apart from it), this is not an exact science. We are dealing with matters relating to humans and for this there is never really a one size fits all scenario.

For many families, as they notice and learn about the difficulties for their child, they come to a growing realisation that these traits and ways relate to and are true for them too. Some welcome that process as it helps them to understand events/times/seasons in their own lives. It can provide some ‘answers’ to questions they may have held internally for many years. Conversely, others run from the potential that they may too be neurodiverse as fast as they are able. Each person will have their own reasons for the way they manage this process, and neither route is better than the other. They simply are as they are and must (in my view) be treated as such.

Specifically in relation to a growing awareness about potential autism in yourself as the adult supporting your child as they are in a diagnostic process, I do have some advice which you can choose to hear or not and act on or not.

If you are also autistic, there is one way of learning for us that helps us keep perspective. That is effectively through social stories. I don’t mean we tell ourselves social stories, but we can use what we are learning about our child/children as a way of understanding ourselves without it having to be solely about ourselves. One relatively healthy approach (in my view) is to keep it (as far as you can) about your child and start to (if you can) put parts of that knowledge into your own understanding of yourself or your past.

Is there any point or purpose in you having a hissy fit meltdown and asking why no one noticed this about you earlier while you feel internally angry that you might have learnt skills to have been able to avoid some of the trickier bits that you have lived? In my view, no. You can do that (of course), if you feel the need (after all, all choices about you are yours to make), but will it ‘help’ you in any way at all? I doubt it. You cannot change what is past, but you are there now to support your child in the healthiest ways possible that will enable them to be the best versions of themselves that they can be. Will you succeed? Sometimes, yes, and sometimes, absolutely not. But through all of it, they will learn a little more about themselves and about life and that will inform what follows…as will you (undoubtedly).

As you help your child to learn about themselves and their responses and ways of being, you can use your growing understanding and insights to be able to improve things for yourself moving forwards too.

You might (as part of the process) become more aware of your own personal triggers (of any kind…emotional, sensory, anxiety…this could be a long list) and then recognise what you need to do for yourself when these triggers kick in (or even better when you see them from afar approaching at speed!). The lists of benefits for you can be great if you are able to keep this as ‘about the now’ and you do not do too much visiting of what is past.

Living in ‘what if?’ land or ‘why?’ land can cause some seriously heavy stuff to materialise which you then have to wade through. Although some of that might be needed for a time, I do encourage you to not visit there for too long, if at all possible. We cannot change what is past and those around us were not aware of our wiring, just as we were not. That is not about fault or blame. It is just what was true.

We have now.

We live now.

We can affect now.

What was, is gone. It has passed.

All we have lived has played a part in making us who we are now.

If we’re here, we’ve survived so far and that is all good.

We can only affect the now and the now will impact the future.

As you notice things about yourself, another question can kick in: Do you need a diagnosis? That will depend on you as an individual. I got my late diagnosis because at the time I knew it was one strategy that would help me to help families see that I had some understanding (albeit only my own and not theirs) about autism (or how it is in me and in those to whom I am connected). Did it help them? Yes…at least, they told me it did.

It is true that having the diagnosis has also helped me have a framework from which to find ways of managing myself as best as I can (with both positive and less than positive outcomes – I’m always learning). You are you and you will decide whether you feel the need to pursue a diagnosis or not.

You’re no more or less you with or without a diagnosis. You’re no more or less autistic with or without one. You’re no more or less valued with or without one. You are the individual who knows you best so you must do what you feel is right for you at the time.

There is also the great fact that as you discover you share some traits and ways with the child you are aiming to help to grow and develop as an individual (who has their individual needs), you automatically have some potentially common ground with them. This level of understanding carries far more weight than countless attempted explanations. You (in many cases) are likely to have a greater understanding about what your child is experiencing than you were previously aware of. You can use this to help them and you.

For the families I have worked with, the best outcomes have been with those who have been able to take a step back from the realisations they have been receiving about self and allow the process to happen. Many beautiful families have allowed the background processing about themselves (or their partners) to happen as they have walked the walk with their child.

I maintain that having an autistic wiring is more of a blessing than a curse (despite the hideous aspects of much of it). As you walk with your child through their process, do please try to remember that you are a human in transition (just like every other human (autistic or not), whether they chose to admit it or not). You are the very best person to support your child as they learn about themselves and their wiring. You will adopt ideas around support that work for you too.

Do us autistic types tend to get obsessive? Yes. In most cases, yes. Will we likely want to explore it all a bit more in relation to self? Probably (at least those of us who are not currently running away from the potential of ‘it’ and us being connected). And that’s all fine and good and healthy as long as we can also keep it about the now.

What you learn about your child, about yourself and about your family as you walk this walk, has the huge potential to help you all…individually and collectively…as you keep breathing and as you take the next step, whatever that is.