Seeking Guidance?

Let’s remove ‘should’ from that title. I wasn’t sure what else to use, but by having to use it, the presentation of my perspective on the matter is aided. There is no should. There is not a manual of what anyone must or should do when it comes to communicating with their child about their potential wiring. Many people will have strongly held views, and I share mine here in case these support the process for you, but there is no ‘should’ or ‘must’.

Before I share my thinking and experiences on the matter however, here come a few reminders: You are the expert about your child. You know your child best. If your child is autistic, you will (undoubtedly) already have established and created ways to support, encourage and help them to manage the less positive aspects of being autistic. You might not realise you have done so, but I am absolutely sure you will have done so. How will you have done that when you have only (maybe) recently realised about their potential wiring yourself? Via your parental instinct and by adapting your ways of being, following successes for you as a family and successes for your child. You will have recognised behavioural patterns, higher than usual stress points for your child (or family) and you will have adapted your methods for dealing with such situations. You may have avoided certain environments or found particular materials are more appropriate for them to wear and you are likely to have needed to cut out labels from all clothing (not always, but it is likely that this is the case).

I am autistic. I have worked with many families who have an autistic child/children. I have strong views about the best ways to manage communication within the family about autism, (and will undoubtedly present these in those terms) but amidst all of that, please remember that YOU are the authority on your child. Experiment with my suggestions if you choose to. Adapt them as you need to. Add them to what you are already doing if that is appropriate. There is NO authority on how any scenario regarding your child or your family must be managed. I repeat that you know your child best and you know your family best.

Would I tell a 2-year-old child that they are autistic? I would not. Would I talk to a 5-year-old about the matter? Potentially, but (and it is a big but) that would very much depend on the child, their awareness of others and their awareness of themselves compared to others. And within that thought lies what I believe to be the most appropriate approach to communicating with a child about their wiring.

There comes a point (whether that be at age 5 or 15 or whenever) where an individual realises they are ‘different’, or that they respond differently or struggle with very particular aspects of life, and they notice that it may not be the same for those around them. I maintain that all humans (of whatever wiring) are ‘different’, but in terms of autistic or not, there are some behavioural, sensory, emotional, and relational differences that can be categorised differently. When I use ‘different’ in this article, it is that to which I am referring.

You will (as the family of one who is potentially autistic) have already taken many cues and leads from your child. You will have hit scenarios and situations that have needed discussion and highlighting so that you have been able to find a way to move forward with them. This is no different. Take your lead from the child.

It is important too, to recognise that the family themselves are often (if not always) going through a certain process themselves about the potential ‘label’ or diagnosis. And this can colour their presentation to the child and so is advisable it is very carefully managed.

One family I worked with were in such a process. I was already meeting mum regularly (I was the SENCo in the school) to support her with the behaviours and ways of her child. I had raised the potential of autism much earlier in the process and we were beginning to pursue a diagnosis but without (at that stage) the child’s awareness. Mum was highly anxious about it all and was very much on her own journey regarding all of this.

As you will know if you are on or have been on the path towards a potential diagnosis, it takes a lot of time. The path is littered with frustrations and delays and (at the time seemingly potential) unreasonable processes. For this family, we were 18 months into the long walk. I was trying to support the family with practical suggestions concerning the behaviours and ways of the child while we followed the necessary processes towards diagnosis.

The little boy often had huge meltdowns. He would say very dark things and his behaviours were extreme, and although we never saw these things in school (which is often the case for families), they were happening more frequently at home. He reached a point, where he (more regularly) became hugely upset and he would tell his mum he wanted to die. For many, this kind of language will (likely) be a huge trigger that ‘something must be done immediately, and this child is in danger’, and there may be times when that is the case, but please hear me out. What the child is using this kind of language, it is mostly that they cannot cope with how things are and are trying to find the most impactful way of telling you that. They do not understand about themselves or their wiring (yet), and they feel have got to communicate their experiences in some way. They know (factually) that taken to as far as it can possibly go, the end of all that is, is the end of life. And so (because they are likely autistic) they will tend to jump to that extreme (we autists jump to extremes as regular daily exercise). It will all (likely) be accompanied by some very big (and often out of control) emotions. Are they actually going to harm themselves as a very young child? It is unlikely but obviously the right precautions and care do need to be in place. Mostly, this is their way of communicating that they have reached a point where they need support to understand what is going on.

This little boy was now demonstrating to the adults who loved him that he needed some answers, even if those would only ever be partial answers. Did we have a diagnosis at this point? No. We were still in the maze of seeking one. Was the diagnosis going to ‘help’ anyway? No. They don’t. They only help if the diagnosis then informs how we best support and empower the person for whom the diagnosis has been given. But we had enough evidences to begin the discussions with the child.

For this family, the child (and he is one of many examples of the same pattern that I could present to you), was 10 years old. He was also starting to notice he was struggling socially with his peers (although he didn’t express it in that way). He felt ‘different’. He could see that he wasn’t managing some situations and he had reached a point of being prepared to accept help.

Mum knew that she was still in her own processing loop. She knew she found it difficult to keep her emotions away from the process or any conversations about it. I had talked with her about how vital it was that she remain calm, measured and free of emitting too many emotions when in conversation with her son, and she had experienced the truth in this, but let’s remember we are all human. There were many times when she couldn’t manage that, and that is right and good and fine. She and I discussed the best way to present the idea about this to the little boy. Mum wanted support and wanted me to do it, which I agreed to (with her present).

We created a space and time when we could all be in a room at school, (as this was his place where he was masking but also where he wasn’t experiencing the full force of any meltdown or emotional overload). I had a very good relationship with him, and he was keen to meet up with mum and me for a chat about some of the things he was finding tricky.

I told him that his mum loves him very much and as he was already aware, she was coming to me to chat about ways of helping him cope with some of the things he was feeling and thinking. (We’d already ensured this was a positive for him and we had been transparent about things we were trying (as ways of support) so he had never felt this was being done behind his back, or that we were talking about him negatively.)

I presented the fact that all people are different and that is how life is. I suggested that people could be grouped differently depending on all kinds of different things about them. He agreed. As a computer obsessed child, I used the PC versus Mac wiring analogy. They are both kinds of computers but the way they work and operate is very different. I told him he already understands more about that than I do, but he knew what I meant. I mentioned that people can be like that. Some are ‘wired’ as PC and some Mac.

I introduced one such wiring as ‘autistic’ which might be a label he had heard of (he had). We talked firstly about some of the things he found tricky, and how many of those things were similar to other people of that wiring. I suggested that although those things were hard to manage sometimes, he is already finding ways of managing them (either by himself or with help from mum or others). He could see that. We quickly moved on to the fact that there are superpowers within this autistic wiring, and it isn’t just about all the things that are tricky about it. He sat up a little straighter and was keen to hear what I was going to say.

I already had some information about famous people historically and currently (at the time) who are known as autistic or are suspected to have been autistic. I presented how these people did what they did because of their ability to focus and obsess on a main interest etc. I said that it doesn’t mean all people who are autistic will become famous for creating something or being an expert at it, but it does mean there might be areas in which he will discover he has extra abilities. One of those for him (as I’ve mentioned) was to do with computing. He got it.

I explained that he might be autistic or he might be someone who has some traits of being autistic. I explained that we felt it was important he knew now because he had shown us he had noticed he was different and he wanted to know why. I explained that we didn’t tell him earlier, because we are not sure ourselves, but now he had reached a point of feeling he needed help and wasn’t coping, it seemed like a good time to present the possibility. He got it.

Could we have spoken to him before it reached a point of him not coping in this way? I’d argue that the reason we were initially even having discussions about how best to support him was because he was already demonstrating he wasn’t coping but at a different level. I’d argue that we needed to analyse this and find ways to support. I’d argue it wouldn’t have been wise to just jump on a label band-waggon before having enough awareness or understanding ourselves as the adults trying to support him. I’d argue that we were the adults both protecting and supporting him and so we had to decide when it was the best time to talk to him. If we had ‘gone there’ with him too early to then discover this was not what was going on for him, we’d be setting him up for further (and different) damage. Is it an exact science? No. Is there a fully right time to bring up the subject? No. One must be aware of the child, the family situation, the process, and the (potential) evidence to date before one makes grand statements about labels/potential diagnosis to the child. This process can give their childlike thinking (what they see as) evidence that there is something wrong with them and that can be hugely damaging. Or (equally as damaging) it can suggest that a ‘label’ will make it all better. It won’t. And this was why, in this case, with this family, we chose to approach it as we did. It was led firstly by the little boy and secondly by his mum and thirdly by me as the ‘professional’ in the scenario.

He had questions. I answered them (unusually for me but intentionally so) with as few words as I could. I knew he was likely thinking of the next question while I was responding to the one preceding it. I let him ask a few more questions and then suggested he now spend a bit of time thinking about it all. I gave him some material to read and a little internet research project to do (supported by mum). I suggested we meet again in a few days to discuss it further and so I could try to answer any other questions he might have. He was keen for this, especially as he enjoyed the attention of it (not in an unhealthy way). We continued this process for a few sessions (as many as we felt were needed).

He did get his diagnosis as confirmation of what we suspected and by the time it (the diagnosis) arrived, he was positive about it. He continues (I am sure, although I don’t know as I no longer am in touch with the family) to find ways to manage self and understand self as best as he can. The initial process for him was a positive one.

Yes, there is always the potential that a family will take the ‘label’ and weaponise it and ultimately make the whole experience and process harder (in the longer term) for the child and for them. Some of my thoughts about that can be found in “Can We Make Too Many ‘Allowances’ Because of a Diagnosis?” and one must make up one’s own mind about these matters, but that article is there for your consideration if you choose to read it.

That mentioned, I have found (in most cases) that families and individuals have wanted to learn about their wiring/label and use this information to best support themselves and each other. This is the healthiest way to be. In many cases, families have been reticent to even consider a diagnosis and (if I’m honest) I’ve felt more comfortable with those diagnosis routes because I knew it would be about empowering the child not giving them an ‘out’, which would ultimately just make everything harder for them in the longer term.

Whether there is a diagnosis at the end of the process or not, some children might still show many traits of our beautiful wiring. Researching and implementing ways of supporting them will still benefit them and you. We are each an individual. No autistic person is the same as another. No ‘neurodiverse’ (of any kind) person is the same as another. No ‘neurotypical’ person is either. That’s all right and good and lovely and as it should be and doesn’t stop us from finding ways to manage life as best as we can by developing strategies for how we are as individuals.

There is one more matter to discuss. I will write about it separately but will mention it now. Yes, ‘neurodiversity’ of all kinds (autism included) can frequently run in families. As you discover things about your child, you may discover things about yourself. Nobody panic! This is all fine and healthy and you will manage that process too. It might even be hugely enlightening and releasing for you.

Finally, please remember that you know your child best and you will find the best way to share thoughts about their wiring with them. Professionals who care will support this process and will want the best for you and for the child. There are some horror stories (of course), but your child has you and you’ve got this. You have. And if you make mistakes along the way, no problem. You are human and you will make mistakes. But your child has you. Your care for them, love of them, acceptance of them, along with your celebration of who they are as an individual is possibly the biggest support you could ever give them.