My autistic son turned 18 last week

Here are 10 things I've learned in 18 years of being his mother.

This is a re-post of a piece I originally wrote for my other newsletter, Fleeting Insights.

Let’s get the conversation started!

On the occasion of my autistic son’s 18th birthday, I thought it might be timely to reflect on some elements of my life as his mother and to share with you what he has taught me along the way.

I have learned far more from him than I have had the privilege of teaching him.

My son was diagnosed at the age of three, by a wonderful, talented and empathetic psychologist who is still his primary therapist today. Supporting my son on his path to adulthood has been, and is, the defining role of my adult life.

My experience of mothering an autistic child has been joyful yet terrifying, clarifying yet bewildering, stimulating yet relentless, overwhelming yet immensely satisfying, empowering yet humbling, complex yet utterly simple. It’s everything all at once and it defies categorisation.

These, for what it’s worth, are the ten main principles that my son has taught me should be my guide as his mother. They are principles of particular relevance to the parenting role in the childhood years, when decisions both large and small are constantly made on behalf of a very young autistic person. But they continue to guide me as my son becomes an autistic adult.

If you are reading this as the autistic parent of an autistic child, I suspect you will find these principles completely obvious. In this piece, I am speaking to, and from the perspective of, non-autistic people who are parents of autistic children.

It is not my intention to paint a negative picture of my role as parent because that is not my experience. My experience as a parent is overwhelmingly positive. But all parents encounter challenges in raising their children, and the parents of autistic children are no different. I’m not going to pretend it’s always been easy. My aim is to offer suggestions to help parents cope with the challenges.

Also, a quick note on language for those new to this area. I prefer and use the term “autistic” but this is a personal choice and I do not intend to imply that others should also choose that language. I often refer to “neurotypical” people in this post. “Neurotypical” is a catch-all phrase commonly used to describe everyone who is not neurodiverse and that is how I use it here. I’ll try to keep other jargon to a minimum, but occasionally you’ll find some probably over-simplified definitions in the notes.

So here they are in summary, my ten principles:

Believe unconditionally in your child

Stop looking for the crystal ball

Don’t beat yourself up over the past

Always strive to act in the best interests of your child (harder than it sounds)

Allow yourself to feel uncomfortable feelings like grief, so that you can move on from them. They are holding you back.

Stigma. Just don’t let it.

Uncover and let go of the assumptions you didn’t know you had.

If you can’t understand why your autistic child just did something, it’s probably not them. It’s you.

Accommodate the inflexible world of the adult neurotypical in this key way - build the self-confidence of others

Don’t fight the autism.

1. Believe unconditionally in your child

The reality of my lived experience is that any parent of an autistic child, unless they are very lucky, will often be faced with doubt and negativity from others. In large part, it’s stigma (which I discuss further in point 6 below), but I don’t think the expression of doubt necessarily comes from stigma per se. Even so, it’s challenging to be constantly on the receiving end of it from doctors, allied health professionals and teachers. It’s demoralising for a parent and distressing to think that your own child may constantly face this doubt and negativity about themselves throughout their lives

Personally, whether it’s stigma or something else, I have found that an important remedy for it is to believe unconditionally in your child. And also, to remember that nobody knows your child better than you do.

This is not to say that you should ignore or downplay challenges and support needs. You need to understand, empathise with and respond to challenges and support needs in order to act in the best interests of your child (see point 4).

But if you don’t believe in your child, hardly anyone else will either. Your aim as a parent has to be, in my view, to set the expectations you place on those who work with or have contact with your child, by modelling those expectations and truly living by them yourself. For me that means always believing unconditionally in my child’s potential, whatever that may be at any given time.

2. Stop looking for the crystal ball

You don’t have one. You don’t know what your child’s developmental trajectory will be. Trying to predict the future, and worrying endlessly about it, serves no purpose other than to wear you down with unverifiable fears in the middle of the night. We all do it.

Of course, we all want to do everything we can to set our children up for a happy and fulfilling future life. My point is that your best way of influencing the future outcomes for your child is to support them here and now.

Naturally, what that means is always having plans A, B and C (and D to X….). What I have always tried do in planning my son’s education, for instance, is to create pathways with exit ramps to other pathways, so that we have choices and options if our first plan isn’t working out. We don’t try to look too far into the future once the plan is in place, instead continually reviewing if the plan is still working now. We aim to ensure that even if my son steps off a pathway, each stage is still contributing to his development and building his skills. In that way we hope to prepare him for a range of possible next steps. And see point 1.

3. Stop beating yourself up over the past

This is the other side of point 2. You are not conducting a controlled double blind experiment as you raise your child. You can never really know if the decisions you made about interventions or support in the past were the best decisions you could have made. You can also never know whether, if you had made those decisions differently, the developmental results would have been different for your child. So stop beating yourself up over the past every time you are confronted with a new challenge.

All you can do, at any given time, is to try your hardest to make decisions on behalf of your child on the basis of your best assessment of the information available to you at that time.

So, instead of asking myself “did I make the right choice six months ago?” I ask this instead:

Are the current settings still the best ones I can put in place, at this time, on the basis of the information I have now and the understanding I currently have of my son’s needs? Should I change them in some way moving forward and if so, how?

4. Always strive to act in the best interests of your child

This sounds so obvious! But ask, say, the parent of an autistic child whose partner/co-parent is in denial over the diagnosis and is not coping with it, how easy it is to always do only what they believe is in the best interests of their child. I guarantee you that parent will tell you they are constantly under pressure to compromise on decisions they believe are right and in their child’s best interests, in order to take account of the views and/or emotional state of the other parent.

Plus, the interests and needs of siblings, and the importance of meeting those needs, must always be at the forefront of a parent’s mind.

And for some families the decisions are inconceivably difficult, when there is just not enough to go around. I have seen single mothers having to choose between paying for their child’s therapy session when their funding hadn’t come through and paying rent the next day.

The tension between different perspectives and needs can be a good thing, because it forces everyone to examine their views and can provide a circuit breaker on decisions that could be improved on or need further consideration in order to balance the needs of everyone in the family (including yours as the parent).

But it can also unreasonably delay therapeutic interventions that could help support the child’s development, or lead parents to make decisions about their child’s educational settings that might not be the best for their child’s needs.

For me, after I’ve received and carefully considered all the therapeutic and/or educational advice relevant to a particular issue, living by the principle of acting in both my sons’ best interests comes down to a matter of intuition. I know in my heart if I am being motivated by something extraneous to their best interests, and I have learned to trust that intuition. But it’s not easy.

5. Feel your uncomfortable parental feelings, so that you can move on from them. They are holding you back

I want to be clear that I am talking here about the slightly controversial issue of how parents might feel about an early diagnosis, not how an autistic person might feel about their own diagnosis in adolescence or adulthood.

For some families, an autism diagnosis is liberating because it offers an explanation for all the things they couldn’t explain. For others, it is a shock and can trigger complex emotions including grief or sorrow and, as I mentioned above, denial.

Autistic advocates often dislike talk of parental grief because it seems like an attack on the dignity of the autistic person, as if their very personhood is a source of grief. I understand where this point of view comes from but I don’t fully agree with it, if only because a parent in a perpetual state of grief is not a parent who is best placed to make the best decisions on behalf of their young child.

Pretending parents don’t have these difficult feelings, or denying parents’ right and human need to work through them, helps nobody, least of all the autistic child.

In my experience, it can be in the best interest of your autistic child for you to acknowledge your feelings of grief if you have them. My hope is that if you allow yourself to feel them, and then do your best to let them go and move to a more positive emotional place, that improves the chances of you being able to do your best for your child.

6. Stigma. Just don’t let it.

There is still such a long way to go to bring everyone in the wider community to a better understanding and acceptance of autistic people.

Most, if not all, parents of autistic children probably have an unpleasant experience of a neurotypical person who stereotyped or just didn’t understand their child’s condition. I’ve been asked whether my child would “grow out of it.” I’ve heard people refer to my child’s autism as being “wrong in the head.” I’ve had people talk about “suffering from autism.” I’ve been told “we can’t help him here.” I’ve had people completely misunderstand my child’s natural human need for social engagement or assume that social interaction is not important for him at all. I’ve had people ask me if I thought another child’s meltdown was just a question of poor discipline.¹

Time and again I have felt subtle or overt pressure to make my innocent autistic child adapt to the inflexible world of the adult neurotypical.

It’s stigma and it arises from ignorance. It prevents others from seeing past the diagnosis to connect with your child at an ordinary human level. It can lead parents to resist “the label”, or to choose not to disclose their child’s diagnosis.² Perhaps worst of all, stigma can cause parents to become hyper-vigilant about enforcing normalised behaviours³ and suppressing natural autistic behaviours.

You can’t let it get to you.

Your child deserves better than to grow up feeling defined by the negativity of stigma. You have to be the bulwark against stigma.

I can’t express it better than my autistic friend and respected former colleague, Sandra Thom-Jones, put it in her recent book “Growing Into Autism” in which she wrote the following about stigma as the cause of parents’ reluctance to seek a diagnosis for their child:

“First, your undiagnosed autistic child will not be protected by the absence of a diagnosis: the labels other people will give them to explain their differences will be far worse……

Second… it is a lot better for a person’s self-esteem to be a successful autistic person than a failed neurotypical person.” ⁴

Hold your head high as a parent. Remember that stigma comes from the ignorance of others and that’s their failing, not yours and not your child’s. Be as patient as you can with people who want to understand better. And, see points 1 and 9.

By the way, if you are interested in building a better understanding of the autistic lived experience, I recommend Sandra’s engaging and articulate book. It would have been particularly useful for me to have been able to read it in the early days following my son’s diagnosis (unfortunately for me, she didn’t get around to writing it until 2022) and I commend it to parents with autistic children of all ages. It’s available here.

7. Uncover and let go of the assumptions you didn’t know you had

This will be a lifelong process. Maybe nothing seems how you thought it would be. If your decisions are unconsciously motivated by trying to make things become what you thought they were supposed to be, then it is probably time to identify and examine some of your assumptions, to see whether they are serving you or your autistic child well. Work to identify your unconscious assumptions and truly let go of the ones that are not in the best interests of your child. See point 4.

8. If you can’t understand why your autistic child just did something, it’s probably not them. It’s you.

This sounds harsh, especially as I just finished telling you to stop looking for that crystal ball!

In my experience there is ALWAYS a rational explanation for your child’s behaviour. It might not be what you, bringing perhaps a neurotypical mindset, might expect, but that doesn’t make it irrational. For example, your child might be trying to regain a sense of control over what appears to them to be a chaotic world. It might be a bit of joyful autistic free association (in my experience this is always perfectly logical when you unpack it). It might be sensory overwhelm. Or your child might be lonely.

Your child might be unable to explain it right now. Or the cause of the behaviour might be remote. But even if you have to wait years, as I sometimes have, before you finally understand what the explanation is, at that point, most likely, it will be rational and will make sense to you.

This is one assumption that I encourage you to start making, despite point 7! Assume, in all your interactions with your child and those who support them, that your child’s actions are rational even if you don’t yet understand the explanation for them.

This is a very profound act of respect and it’s one your child deserves.

9. Accommodate the inflexible world of the adult neurotypical in this key way

Be prepared to spend a lot of time and energy in educating neurotypical people who are working with or supporting your child. Start with their self-confidence.

When people have limited experience of autism, they often create barriers to their own success, losing sight of their instincts and experience. The more you can underpin the neurotypical’s self-confidence, the more successful the working relationship may be and the better the outcomes for your child.

You may bristle at the idea that your role includes training and supporting the neurotypical people who are meant to be supporting your autistic child. You may wish you didn’t have to keep making accommodations for what I described above as the inflexible world of the adult neurotypical. You may feel that they are adults, they hold all the cards in the relationship and should have the personal insight to drive their own development.

But that’s why it’s your role. Because too often they lack personal confidence in their relationship with your child, particularly in the education system. It can make a very big difference to your child’s success at school if you are able to take an active role in giving teachers the confidence to believe that with a little extra knowledge, understanding and empathy, they already have most of the skills they need to connect with and teach your child effectively.

10. Don’t fight the autism

I don’t always outline this principle to parents who ask for my advice. Quite often I feel that parents are not ready to contemplate this principle and it has required me to grapple with all of the learnings in points 1 to 9 above, and more, to understand it properly myself. But it’s a simple yet incredibly powerful way to state my approach to supporting my autistic son’s development.

Sometimes a mother will say to me that she’s been doing everything she can to “fix it.” I don’t have the heart to tell her that in my experience, this approach never really works and just condemns her to a persistent sense of desperation and unhappiness for the child. Our best understanding of autism is that it is a lifelong neurological condition, even though it may manifest in different ways along a person’s developmental trajectory. If you are trying to “correct” or “fix” the autism as a parent, I think you are setting yourself up for failure.

Sometimes though, if someone says to me that their attempts to support their child’s development don’t seem to be helping, I ask them to consider whether what they are doing supports the child’s development, or whether it is actually, in effect, an attempt to fight the autism. By this I mean to try to “fix it” by suppressing autistic traits and/or re-training natural autistic behaviours.

In my experience, the minute you recognise that what you have been trying to do is actually just fighting the autism, and you stop trying to do that, things get better. Your child feels understood because you start to meet them where they are, instead of trying to make them into something they are not. They feel more accepted for who they are because you are not constantly trying to “fix” them or suppress behaviours that feel natural and essential to them. You do better at connecting with them.

What I’ve learned is that everything gets better when you stop fighting the autism and accept the full personhood of your child.

These are the ten principles that guide me. You may have others. Please feel free to share them in the comments if you wish.

1. In case you were wondering, all these questions and things are bad.

2. Disclosure is a sensitive question that I am not going to get into here, except to say that sometimes a disclosure is really important to, for example, an educator’s ability to teach an autistic child effectively and with empathy.

3. “Normalised behaviours” are behaviours that are acceptable within the dominant neurotypical community. When an autistic person is forced to conform to these behavioural norms, usually the purpose is to minimise the appearance of difference. This is also sometimes called masking, especially when the autistic person themselves chooses to hide their natural autistic behaviours.

4. Sandra Thom-Jones, “Growing Into Autism” (2022) Melbourne University Press.