Helen Needham

How My Son’s Autism Changed Me

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Two years ago, we were told my son (then age 5) likely had autism. It came out of the blue, and I found myself thrown into a world that I had little understanding of. Sitting in the doctor’s room, I had no idea of the journey it would take me on or what a personal impact it would have on me.

I had been going through a tough time and felt like my life had become stuck, as I struggled with being a working mum. I had been seeing a life coach and just the month before we had done an exercise to imagine my future self, and I had made a list of the things to focus on. I was intent on becoming the person I had imagined myself to be.

Suddenly, I was focused on finding out more about autism, applying for an EHCP, battling the school, which wanted to exclude my son for challenging behaviour, and attending the many assessments required to get a diagnosis. It was hard to think about anything not linked to autism, and I quickly forgot all about my list. How could I think about my future self when there wasn’t even time to think about my present self?

My son is now in a much better place and life has become a little calmer. He has the right support in a new school and we understand more about his needs. Recently, I found my list and was amazed to realise that helping my son had helped me move closer to my future me, not further away.

I became connected. I met other parents through online forums and local support groups. Shared experiences and words of encouragement have helped me realise that I am not alone. Realising that many people are experiencing challenges that we don’t know about, I now take more time at work to see how the people around me are doing, rather than just focusing on the job. This has led to new friendships, and I feel more connected that ever before.

I learnt how to take a breath, slow down, and make time. At work and at home I found ways to do less, and started to use mindfulness to focus on the present rather than worry about the future or the past. This also means that I now try to just do the critical things that really need my attention, and have learnt how to say “no.” Funnily enough, I am now less stressed and am achieving a lot more with a lot less effort.

I started to give back. I shared my experiences in a blog, and now publish a weekly newsletter of blog posts and articles from other parents. This has allowed me to help other parents know that they are not alone, and to find answers to the many questions that they have. With an increased understanding of anxiety, I am a champion for mental health at work, and I have been able to help a number of people struggling with their own personal challenges. Helping others has allowed me to take some positives from our own experiences.

I stopped comparing. My family life is different to most of those around us, and I have accepted that there are many things that other families can do that we can’t. Before all this happened, I had been putting a lot of pressure on myself to be promoted, as all my peers had already made this step. I now know that their success is not my failure. We just have a different path.  Mine is on a scenic route that is allowing me to learn so many other things that I wouldn’t have if I had got my promotion earlier on. Rather than focusing on the things we can’t do or haven’t happened, I try to celebrate the little moments and appreciate all the things that have happened.

Life has been tough, and we still have our tough times. However, I know that I have changed for the better as a result. In facing the many challenges, I have come unstuck and now understand that taking time out to connect with the people around me is the key to helping me move forward.

 

Jodie Eaton

Autism: Don’t Force Me Into Your World Before You’ve Experienced Mine

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I am a strong believer in Early Intervention for children diagnosed with autism and, in fact, any other condition that a child is diagnosed with that requires extra support.

Early Intervention doesn’t have to mean thousands of pounds forked out by the NHS or the LA for access to specialist treatment. It doesn’t necessarily mean that the child has to have XYZ therapy to be able to access life, as we know it. Although that would be fabulous, wouldn’t it?!

Let’s go back to basics here, because all these children really need is support and understanding from the people who are with them the most: parents, teachers, grandparents, peers and siblings.

Children who are forced to conform into a society that they do not understand are going to lead a very confused life. It will create greater problems and difficulties for those being made to conform to anyone’s idea of normality. Suppressing a child’s way of life is creating a monster. A great big monster that, one day, simply will not be able to cope in the world that they were forced to live in.

Entering their world and seeing things from their perspective will only create a positive outcome. Before you can lead a child into “our world” or “your idea of normal,” it is crucial for you to experience their “normal.”

Experiencing the things that the children take great pleasure in will enable you to form a trusting bond with that child. In time, when the child knows that you understand, they will begin to WANT to enter your “normal.” Tell me, please, instead of trying to make children sit still on their chairs, hands in their lap, looking alert and taking everything in, why can’t you lay on the floor with them and roll cars backwards and forwards for 10 minutes?

“It’s fun watching these wheels going ’round, the colors on the metal are creating pretty patterns when they hit the light shining through the windows and are spectacular to look at out of the corner of my eye. The reason I do it so much is because I am enthralled with how these wheels work, and absolutely mesmerized by how the light shining on this piece of metal can create rainbow patterns on the wall that is otherwise colorless. I want to show you what I see when I lay here. I want to tell you, but I cannot find the words to express how I feel. Sometimes I just wish you’d lay here with me–is that too much effort? Is it too much to ask? Do you not see what I see?”

“If you cannot see what I see, how do you expect me to see what you see?”

“Life is a two-way street, you know. I don’t want to be outside the classroom because I cannot sit still whilst you read a story. I really don’t want to be over here on my own, lining up these books whilst everyone else is taking part in group work. I really just want to be included somehow, but that’s up to you because I’m still little, you see, and I haven’t yet learnt how to problem solve. Could you help me, just a little? I promise that soon I’ll try the things that you’re asking of me, but I just need you to understand and accept me first.”

The number of children being diagnosed with autism is increasing rapidly. As research grows and more is understood, more children are identified as having autism than ever before. We really need to change our outlook on “normal.”

Children need extra support in schools; the SEN budget has been crippled to such an extent that even the children with more severe needs are being turned down for extra funding. Early intervention, early understanding and acceptance are all vital. If the child doesn’t get these important things early on in their life and in the educational setting, their behavior may spiral out of control. The child may end up being excluded for behavioral reasons and moved to schools with policies that completely defy the techniques that are necessary for our children.

It’s quite simple, really. We need to stop making these children suppress their natural instincts, their natural abilities and their outlook on the world. Their way isn’t wrong, or bad–it’s simply theirs. Who are we to take that away from them? Why should we force them into our world without fully experiencing theirs first?

Laura Rutherford

The Unpredictability of Sensory Processing Disorder

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I never knew about sensory issues before having Brody. I wouldn’t have believed that a child could get so upset at the sight, touch, smell or sound of something — if that something wasn’t typically upsetting.

Brody’s sensory issues were visible before we even knew what they were. When he was weaning as a baby, he would often gag at the sight of food to the point he would vomit and refuse to eat. When we went to play groups, he would retch when he saw other children eat grapes and bananas. When I gave him cooked coloured spaghetti to play with, he looked at me in sheer horror, repulsed. He threw up at soft play once after touching stringy sensory lights and on one occasion was sick touching wet washing that had come out of our washing machine.

It sounds so silly, but I used to put it all down to reflux. Because his doctor put pretty much everything down to reflux back then — his delays and his daily vomiting.

It was only as time moved on — when we realised that Brody had various disabilities and I had the opportunity to meet more doctors, therapists and mums walking similar paths—  that I discovered sensory issues was a thing. And that it was known to many as sensory processing disorder (SPD).

Apart from the fact that it upsets my beautiful boy, the thing that really frustrates me with SPD is its unpredictability. There is no consistency, so I can never call it.

SPD can make me out to be a total liar to those who don’t understand its ways, which, let’s face it, is most people. One day, Brody won’t eat something. He’ll recoil at the touch of it and push it away, starting to gag. A few days later, someone will offer him the exact same thing. It could be a banana, a chocolate biscuit — anything. I’ll explain the situation to them and then he’ll quite easily take it from their hand, have a bite and treat it like it’s the nicest thing he’s ever tasted.

SPD can make simple things at home a nightmare. Some days I can vacuum our living room whilst Brody sits on the sofa and he doesn’t even flinch. Other days he screams as soon as it’s turned on and throws the nearest object in protest — usually towards me. If someone in another room uses the handheld vacuum, you need to be really careful that he doesn’t hurt himself or someone nearby as soon as he hears it. Needless to say, we usually try to just vacuum when he isn’t in the house.

SPD can let its presence be known anywhere. Sometimes we can put petrol in the car and it is no big deal. We’re just like any other family filling the car up. Other days, just turning into the petrol station, knowing that that the noise of the tank being filled is coming, is enough to make Brody screech and cry — and believe me, he rarely cries.

SPD can make our favourite places hard to enjoy. Like our garden, which is the one place where we can just go outside that is safe and accessible for Brody. But sadly, his sensory issues mean that we never know how he’ll react when we step out the back door. It could be the sound of a lawnmower a few houses down, the wind or something like the touch of the sand in the sandpit. When he was a toddler he used to gag when his bare feet touched the grass. Thankfully, that one stopped, as it was as tricky as it sounds!

SPD can ruin family days out for Brody. We can be eating in a restaurant where he’ll suddenly gag because of the food we’re eating, so we need to leave. Or he can be enjoying soft play and someone turns on a coffee machine in the background and he is instantly distressed.

Don’t even get me started on hand dryers in public bathrooms.

SPD is hard on everybody, but especially Brody. I can’t even begin to imagine how hard it must be for him. Because he is non-verbal with a learning disability as well as autism, sometimes we just can’t guess what it is that is upsetting him. And that’s so tough for us all.

Over the years, some of the things he has struggled with because of SPD have improved somewhat. He never used to be able to tolerate sitting and eating with other children at all before he went to nursery. Now he sits with children every day and manages so much better. He will still gag occasionally, but it’s hard to know if it’s because of sensory issues or because it’s his way of saying “no.” Nursery has helped him so much.

One thing that is almost always consistent, though, is that a cough and cold brings it tenfold. Being unwell rarely doesn’t affect him when it comes to the sight and touch of even his favourite foods.

We’ve learnt to accept that we can’t predict sensory overloads. That some days everything will be fine, and other days things will be more difficult. But I don’t know if its unpredictability will ever not be frustrating for us — especially Brody. Because, naturally, we just want him to be happy and enjoy simple things. And SPD has the power to prevent that.

It’s uncontrollable.

Lynne Pearson

Telling People Your Child Has Autism

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No one has a child hoping that they will have problems and difficulties in life – that would be absurd.

We want our kids to fit in with their peers, have friends, enjoy their childhoods and do well at school, but sometimes life doesn’t dish up exactly what we were expecting.

Seeing your kid on the edge of things struggling to join in is a painful experience, as any of us who have been in that position can testify.

When Edward was first diagnosed as having Asperger’s Syndrome it didn’t come as a surprise to me as I had suspected that he was on the spectrum on and off for quite a number of years. It was more of a shock for Nick, and I remember him asking the psychologist who gave us the diagnosis for a percentage score of how autistic Edward actually was. The conversation went into a strange loop, with the psychologist unable to give a precise figure and Nick struggling to get a handle on the situation without some tangible score.

When we got home, we contacted both sets of our parents and let them know. Then we had to work out who else to tell and in which order. Edward was 8 years old at the time and it seemed only appropriate that, seeing as he was old enough to understand, he should know about his diagnosis before anyone else. So we sat him down and told him.

I’ve written about how we did this and how Edward reacted here.

Nick and I both agreed that school staff needed to know. After that it became more tricky. We wanted to tell our friends but were aware that, if we did so, some of them would inevitably mention it to their own children. We wanted Edward to be settled with his diagnosis before he had other children asking him about it. Nick also needed a bit more time to get his head around it first.

In the end, once we’d had a bit more time to digest the information as a family, we did start to  tell our friends. Sure enough, one family must have talked about it in front of their own children, as Leila came home from school reporting that one of our friend’s kids had asked, “Has Edward got autism?” I was just very glad that we had sat our kids down and explained autism to them first. I wouldn’t have wanted any of my kids hearing about Edward’s autism as if it was something scary and frightening.

Edward didn’t want his primary school class to be told about his diagnosis, although this was something offered to him by support staff.

Towards the end of primary school, Edward was open to letting family friends know about his diagnosis. We found a very useful book called, “Can I tell you about Asperger Syndrome?” by Jude Welton. It’s a short read and can be read by children and time-pressed adults alike. It gives a quick overview of what it is like to have Asperger’s from a child’s perspective. Quite a few family friends read the book and I think it gave them more understanding and patience toward Edward.

Once Edward reached high school, I realised that a real shift had occurred in terms of how he viewed his autism diagnosis. He wrote this when he was 13 years old:

“I have a condition called Autism. It affects my behaviour, and makes me less social but more focused.

Most people see autism as problem but I see it as a feature of personality. If there was a cure I would not take it…. because I would die and be replaced by another person inhabiting my body. It would not be me, but a less interesting version of me without my best and worst features.”

If you are telling people about your child’s autism, I think it is worth pointing out what their strengths are as well as their weaknesses. I recommend letting people know what things will help them stay calm, what things they will enjoy and what they will be motivated by, rather than only focusing on the negatives. Taking this approach is a more positive way of explaining who your child is and what they need.

A few months ago, I read an article about a 19-year-old boy who had been diagnosed with autism as a young child. His parents had kept his diagnosis a secret from school, friends and even grandparents. They claimed that they had successfully managed to help their son pass as “normal.” I wonder how on Earth they did this – and I also worry about the mental toll this took on their son. I want Edward to know he has autism. I want other people to know and understand what this means and I don’t want him to have to hide.

Our kids will become adults sooner than we can imagine, and a world where autism is less stigmatised will be a better place for them to flourish.

Although I would never wish any of the difficulties that Edward has experienced through his autism on him, he simply wouldn’t be the interesting character that we know and love if he wasn’t autistic. The challenges he has faced have forced him to develop buckets moreof  self-awareness, reflection  and perseverance than I had at his age, and I can’t help but hope that this will stand him in good stead for the coming years.

A version of this post first appeared here.

Jodie Eaton

The Forgotten Carer

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I am a forgotten carer. I didn’t choose to be a carer and, if I am honest and I had a choice, it wasn’t on my list of dream jobs when I was younger. However, when you have a child or children with disabilities, you become a carer by default.

Parents like me have no choice in it; it is something that we become instinctively and quite rightly so, as they are our children. I brought them into this world and I will care for them to the best of my ability until the day I die.

When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those. I am a full-time advocate, fighting battles with teachers and the local authority over my child’s right to a suitable education. When necessary, I battle with GPs and the NHS for hospital appointments and assessments with the relevant clinicians, taking notes on everything. I track dates, make follow-up appointments, submit paperwork on time and keep a diary of important dates. I arrange blood tests and then spend months preparing a socially and mentally impaired child for what will happen. There are dates for everything — I’ve learned to juggle my calendar with military precision.

I am a forgotten carer. As a direct result of becoming a carer by default, I am, in effect, unemployable. I don’t want the benefits that having a disabled child can qualify us for, I want a career and I don’t want my child to be disabled. I am not lazy — I want to work. Sadly, I simply do not have the time to be reliable for any employer. Even being employed by my own company resulted in me having to train someone else to fulfill my role, as I couldn’t meet my obligations in the workplace.

I am a forgotten carer. There is no support, either mentally or physically, for carers of family members that have no voice of their own. Services argue over who should be providing the support that my child needs. Respite services are turned down for various reasons that seem totally unjustified, and when I ask for reevaluations, they move the goal posts even further. Families like mine reach their breaking point and risk simply falling apart.

I am a forgotten carer. Pushed aside and broken, exhausted and stripped to my very core. Friendships and relationships have diminished before my eyes because I’ve lost sense of whom I truly am.

We are forgotten about. And all too often, due to the enormous stress and physical strain that we are under daily, we have our own health issues to contend with. I’ve been diagnosed with several conditions that are triggered by extreme stress. Who will look after me if I end up disabled? Who will look after my children? Will they be taken into care because I can’t fulfil my duty as a parent, let alone a carer? I worry about everything — What if I end up depressed and unable to care for any one?

I am a forgotten carer. I am exhausted. Sometimes it’s even too much effort to take a simple bath or shower. Forgotten carers can feel underpaid. We fit in more than 24 hours’ worth of work into a day, and our shift never ends.

I don’t want to be a forgotten carer anymore. I definitely need some help.

Isn’t it about time that “The Forgotten Carers” aren’t forgotten anymore?

Until that time comes, of course I will continue to go above and beyond. I will continue to push my broken body through ridiculous obstacles and I will continue to care and love my children unconditionally.

Angela Conrad

The Day My Child Accomplished Potty Training

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Whew! I feel like I can finally breathe a sigh of relief. I am raising two boys on my own, and both happen to be on the autism spectrum. Therefore, breathing easy just doesn’t happen in our house, between all of the sensory overloads, meltdowns, tantrums, inability to express needs and so forth. However, now a very small part of me can relax because we accomplished potty training!

It took over 18 months, and it was no walk in the park. In fact, it came with meltdowns, screams, cries, kicks, hits, feces on the wall, and feces and urine on the carpet. I know—gross! But when you are trying to potty train a non-verbal child with severe autism, it isn’t pretty.

Every parent dreads the potty training stage. When you are an autism parent, you dread it even more. Every rule and suggestion that you were ever told from neurotypical parents goes completely out the door. It simply doesn’t apply to the strenuous task that you have on your hands.

There were times I never thought I would achieve what we did. Yes, I wanted to give up many times. In fact, I clearly remember crying myself to sleep many nights out of frustration and pure exhaustion over potty training. Some individuals with autism are never able to accomplish this milestone. Therefore, I am very thankful and grateful that we were able to accomplish this step in our journey.

All the tears and sweat was worth it. There was nothing like the feeling I had on the day that I realized, “He is getting it.” On that particular day, I walked into the bathroom to find Trenton on the toilet. Goosebumps instantly blanketed my body. I didn’t tell him to go. I didn’t force him and drag him to the bathroom. He went all by himself. My son was sitting on the toilet and doing what we had been working on for months! Instead of tears of frustration, I cried tears of joy.

It was very clear that I wasn’t the only one that was happy with this big moment—he was too. The grin he had on his face while he was clapping his hands with excitement was priceless. He knew exactly what he was doing and he was just as happy as I was. From that day forward, I saw the light at the end of the tunnel that I never thought I would see.

By no means could this have happened without my son’s fantastic team of therapists working so diligently with him while he received applied behavior therapy in their facility. His team of coaches at Harsha Autism Center deserves much credit for this accomplishment. If I was trying to do this without the help of his therapist, we wouldn’t be where we are today.

So, to the parents just starting this step on your journey, hang in there. You will go through the unthinkable. You might have a day or two where you simply think you smell like the potty because it is all you deal with. Your heart will sink at the sound of the timer going off because you know how much work it is going to be to get your child to transition to the bathroom. I know you will be exhausted. I know. I understand. I get it. Please stick with it and be consistent, because it is amazing when you all finally get there.

Miriam Gwynne

When You Still Get Flashbacks to Diagnosis Day

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Some days stay in your memory for a long time: the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me, one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that, either.

I put it to the back of my head most days. I rarely read the report I was sent, as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old and waiting on his final assessment for a lifelong diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turned out I was wrong.

I was utterly devastated to hear that my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things, and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son… I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even in school yet.

When he was diagnosed, he was only just walking. He had no language and little awareness of the world around him. He didn’t even know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. Noone offered me hope.

It was a dark day.

I could take you to that building even now, despite four years and five months having passed since we were there. I still see the waiting room in my mind. I can smell the sterilised toys and the wiped-down plastic seats. I can hear the voice calling my son’s name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a momentary flashback to diagnosis day again. Except this time I didn’t cry at the memory–it was more of a shadow in the background.

It has truthfully taken me many years to get to this point. Some days I hate even being referred to as “an autism mum,” as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today, I say that with pride and a smile. My son is still non-verbal, still not potty trained and still requires around-the-clock care. He has no idea what happened the day he was diagnosed, and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Whether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my child’s diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life-long condition with no cure.

So, what most helped me stop those flashbacks and memories from taking over? Hearing my brown-eyed boy’s laugh, watching him smile and realising that he may have autism, but autism in no way defines him.

We are doing OK. We are a team. I help him and he helps me, too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.

Angela Conrad

As Another Year Draws to a Close…

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As another year draws to a close, I realize that the little piece of my heart that had once seemed forever broken is growing bigger and bigger with each passing year. I have heard that grief and pain get better as time passes, but they don’t. A person’s way of coping gets better, but the pain is forever there. The same is true for a family dealing with a child who has a severe disability. The pain from the daily struggles is always there—we just find better ways to cope with it as time goes on.

When Trenton was first diagnosed at the age of two, my outlook and hope were much bigger and brighter. However, as I watch him grow older and get bigger, there seems to be a dimmer switch on my hopes for the kind of future that I longed for my son.

The years go by. The therapy sessions come and go. Have we made progress during these years of therapies? We most certainly have. However, his progress as a child with severe autism is very slow. The steps and progress are huge for us, but in the autism world, as most of you know, we travel at our own pace and it’s very slow. However, this year we did achieve potty training! That was the hardest task that I have done yet with my sons. It was an 18-month process with lots of tears and meltdowns, but we did it!

I am grateful and forever thankful for each passing year with the progress that we make. But, if I am totally honest, it pulls at my heartstrings. I can’t help but think that, in a way, it gets a little bit worse emotionally as time goes on because he gets older and his disability is more obvious. He doesn’t blend in as well with peers his own age. He is getting older but is still not able to communicate. I could go on with the list, but I am sure many of you understand exactly the areas that I am talking about.

As parents, we want nothing but the best for our children. I know all the sleepless nights we have been through this year. I have witnessed the hard work at OT, ST, and ABA. I am there each step of the way with him and, if I could make the progress go faster, I would. However, at the close of each year, I find myself changing my goals a little bit. I will always hope for the best outcome in life, but there is a time that I have to accept what it is looking like.

So, am I looking forward to what 2017 will bring us? I sure am! In every year that comes and goes, I have met and become aquainted with many amazing fellow autism/special needs parents. We all know that we couldn’t get through our journeys without each other. So, to you, my fellow autism/special needs parents, I wish you nothing but the best in 2017. I hope you and your children are able to make huge strides and achievements this year. We have another full year to see what we can accomplish in our exciting world of special needs.

Lynne Pearson

Teaching the Art of Conversation

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Arthur was a single middle-aged man who had lived alone since the death of his mother. His greatest love in life was trains and he knew absolutely everything about them. If you ever bumped into Arthur, he would start talking about trains whether you wanted to or not.

Unbeknownst to Arthur, he was unwittingly boring people to death. Some avoided him because they couldn’t cope with having train facts downloaded to them. Some became silently frustrated as he stubbornly refused to pick up on subtle hints that they were not interested. Others tried to be more direct by saying, “Arthur stop talking to me about trains.” But even this approach was rarely successful, as his love of trains was so great he couldn’t contain himself.

We lost touch with Arthur a long time ago, but I now realise that he was probably autistic.

When he was younger, our son Edward used to interact in a similar way to Arthur; although, thankfully for us, he was interested in quite a few different topics. Conversation with Edward was pretty much a one-sided information download rather than a conventional two-way exchange.

Once I observed him and his friend Ned playing a game where Ned said the name of an animal and then poked Edwards’s shoulder (which was the imaginary computer button), and Edward proceeded to give a random fact about the named animal in a robotic voice. They played the game for a good hour with Ned trying to catch Edward out with more obscure animals; both had a lot of fun.

This type of interaction, though, is hardly fit for purpose when it comes to making and keeping friends, especially once you hit the teenage years. I realised that Edward was going to have to up his game and learn some subtle but important conversational rules to help him get on in life.

We started tackling the “art of conversation” training when he started high school. We spent a lot of time, over many years, talking about the things people do if they are interested in what you are saying:

  • They look at you.
  • They lean towards you very slightly.
  • They make little sounds to let you know they are listening (mmm, yeah, uh huh).
  • They nod their heads if they agree with you.

Non-verbal forms of communication can be very hard to notice if you have autism, but if you are made aware of these communication signals you can look out for them and learn to understand what they mean.

We also taught Edward to make a statement about a topic he wanted to talk about and pause (count to five silently). We told him that if the other person was interested in his chosen topic, they would ask him a question about it. We explained that he could answer the question but only with one or two sentences. Then he had to stop and wait to see if the person wanted to carry on talking by asking another question or making a comment about the topic, which was their way of signalling that they were still interested.

We found it helpful to give Edward a set of descriptions of what polite people might do if they are getting bored, which included:

  • Glancing at the clock, phone, or other people a lot.
  • Fidgeting more.
  • Hinting by saying things like, “I’m not really into X” or “I don’t really know much about X” or “I’m not as into this stuff as much as you.”
  • Becoming completely silent.
  • Looking at you less often.
  • Introducing a completely different topic into the conversation.

It’s much easier for Edward to know what’s going on if people ditch polite etiquette. Edward would be completely fine with someone saying, “I’m bored with this conversation. Can we talk about something else?”. But not many people are able to be this direct in their communication style, especially with a kid.

I was speaking to Edward about communication just before I wrote this and he reflected that his conversational style has changed over recent years, in that he is no longer just information-downloading at people but now has conversational turns. I asked him how he thought he had managed to make the change and he replied:

“I think very consciously about what to say to make a conversation work, just like everyone else does.”

My son was unaware that most of us never have to give much thought to talking to people—we just get on and do it. His words made me feel so proud of what he has achieved, but they also gave me greater insight into how much effort he makes just to have a chat with his friends.

With our current education system, it’s easy to get caught up with making sure our kids are making academic progress. But if you are raising or teaching an autistic child, you have the additional task of trying to help them learn these types of social communication skills.

If you are about to embark on “art of conversation” training with your own child, I wish you all the very best.

A version of this piece was first posted here.

Lora Charles

My Son, My Beautiful Son

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My heart is breaking, aching, falling into pieces, cascading downward, landing softly, interspersing with yours. This intricately designed puzzle devoid of instructions, each interlocking piece lavishly stained in colors and patterns, facing upward, beckoning for assembly—it’s complicated. I struggle to place the oddly shaped pieces in harmony with the others; there’s no clear picture of the end mosaic, completely lost in its complexity, vulnerable, apprehensive, feeling inadequate and incapable. Countless pieces isolated, waiting to be orchestrated into a recognizable portrait, unobscured.

I envision a landscape of porcelain and seafoam hues forming a vast ocean sea, a spectrum of tangerine and fuchsia stretching across the cloudless sky generated by the disappearing sun over the earth’s horizon. Waves rolling gently, seagulls gliding overhead rhythmically squabbling, calm breezes whispering. I visualize my sweet boy exploring the shell-ridden sandy beachfront, jumping over foamy waves, fulfilling his sensory needs, enjoying peace, solace, finding contentment. He belongs here.

Sweet boy. My breaking, aching heart is intertwined with yours; in indescribable ways you have captured my soul and I never want to let go. It is you that has taught me genuine, profound, compassionate love that knows no boundaries; an unconditional love that envelopes, accepts, hopes, and perseveres through unpredictable challenges. I promise to walk by your side, be your voice, advocate on your behalf. I am entangled in the obstacles that materialize before us, my hand surrounds yours, together we will be brave.

There are fragments interlocking beautifully, revealing portions of an exceptionally beautiful puzzle, more prominent than the futile pieces refusing to connect. This artwork reveals your story of bravery, beauty, complexity and struggle. Your bright, beautiful eyes radiate joy and curiosity, but also express fear, apprehension and doubt, I notice. Continue to teach me how to assemble additional pieces, to accept, discern, recognize the multitude of layers, fragments, segments that fabricate my sweet, amazing boy.

Forever I am changed. Forever I am stronger. Forever I will love you, just as you are.