One of the most common search questions which lead people to my blog is ‘is my child autistic?’. I myself had typed the same thing into google many times back when J was 1 years old…more so towards 18 months old.
Looking back, especially now I have Baby F to compare to, there were actually signs earlier than this. I know that this stage can bring about a whole range of emotions. I know for myself part of me didn’t want J to be autistic because I worried about his future and the care he’d need but the other half would feel relieved when what I found on google matched my experiences. This was because it meant there was a reason behind everything, it wasn’t my parenting or because I was doing something wrong.
I can’t remember the exact moment that autism flashed into my head. But I do remember that one of the things that led me down the path was when J lost the speech and babble that he had. I knew then that something wasn’t quite right…that was 9 months old, by 1 years old I knew it wasn’t a phase. The communication wasn’t coming back, and by this point other issues had come forward. So I thought I’d share with you how our journey began.
Believe it or not J was quick to find his voice. By 9 months he was saying ‘ta’, ‘hiya’, and ‘dada’. He was making speech noises and babbling. Then it stopped. It was like someone switched him off. The only noise he made was the laugh or cry and the odd random sound. As he got older it just wasn’t coming back. He wasn’t waving or pointing to things either. He was very expressive in his own way but just not developing as his peers.
According to the NCBI, regression is common in those diagnosed as autistic. It can present as language/communication (most common regression), play skills or social skills. It usually happens around or before preschool age. Regression can sometimes happen because of other complications or development difficulties, or just because a child has changed their focus. It’s something to be mindful of and speak to a professional about if concerned. For us, J’s speech did eventually develop again and he can now use functional speech (although still some irregularities but that can be expected with autism).
J can be difficult to get a response from. I don’t mean he just ignores us (sometimes I do think its more ‘selective hearing’) but he either zones out or it’s like he doesn’t even hear us. As a baby J didn’t respond to sounds as expected. In fact, before the age of 1 we were sent for two hearing tests because professionals were puzzled by it…both times the tests were clear. I remembering dropping a bunch of keys near him once (accidently) and he didnt react at all. As he got older, he didn’t always respond to his name and even now he can have difficulty responding to generalised instructions such as ‘stop’.
As he’s gotten older he is better at responding to his name and instructions. It often depends on circumstances such as the environment (the sensory factor and the social factors), what mood he’s in (if he’s emotional then you will NOT get his attention with support) and whether the instruction/command was obviously for him/routine instruction (eg: saying stop when in a crowd is no help as even though its my voice it wont be a meaningful enough command…I find saying ‘J, stop now’ works better as it’s more direct).
Hand movements and spinning
I noticed as a toddler that J would ‘flap’ and held his hands in unusual positions. We used to joke that one day he would fly away. There wasn’t a pattern (at the time) and he’d do it when happy, sad, angry, hungry, playing, walking…whenever he fancied. It would, however, intensify when he was unsure of something or didn’t like something. We later found out that this was called ‘stimming’ (‘Agony Autie has a great selection of videos all about stimming which are worth a watch).
Now a days J’s stimming has evolved. He doesn’t flap as often now (That’s only if he’s REALLY struggling) but does do the unusual hand positions and movements – his most common is what we affectionately call ‘the claw’ which is one of his stress positions. He also hums and makes repetitive sounds (almost like singing), shakes his head (quite violently) side to side or rocks back and forth so his head hits something, spins and jumps, follows/seeks out lines. We encouraging him to use them as it’s his way of focusing his mind and body to enable him to cope with what’s going on…or we try and take away whatever factor is causing the stims to help him regulate.
The spinning is a stim but it’s more of a sensory reaction for him. Spinning is part of the vestibular sensory system. It affects the bodies ability to balance and coordinate movements in relation to the surroundings. By spinning, J is activating all this and gets pleasure from the sensation of feeling dizzy or off balance. I knew it was something ‘more’ when he would spin and find things that he could spin on and just wouldn’t get ‘wobbly’ afterwards. He’d spin for ages and ages, just loving life. This is one of his sensory stims that hasn’t changed…except now he insists I sit on the spinny toys too…I definitely do not enjoy the vestibular system doing it’s job!
For a long time, J just didn’t seem to know or have interest in ‘playing’. He didn’t really want toys and when he did have them he’d wouldn’t use them as expected. Things either had a purpose, or they required putting in lines. That was his world...lining anything and everything up.
He also wanted to open and close everything. Using doors, drawers, flaps in books, boxes…anything that could be opened and closed would amuse him for ages. I had a video of him opening and closing a toilet door for 8 minutes. He spent longer than that doing it but my battery wasn’t great on phone. J would get very upset if he couldn’t complete these actions. At preschool, it was obvious that his play skills were not the same level of others of his age. Yet, he had an amazing ability to be logical and problem solve that was above those who were his peers. Autism doesn’t have to mean a child will have learning difficulties (sometimes Autism will be accompanied by Moderate/Severe Learning Difficulty or Global Developmental Delay) and sometimes a child will struggle in some areas and excel in others.
J had a specialist nursery nurse who supported J to build on his skills, and was placed on an Individual Education Plan to help in preschool. It’s important to know that your child DOESN’T need a diagnosis to be entitled to support.
This one started at 18 months. I was fortunate as J was such an easy child to wean. He loved food and ate everything that was put in front of him. He started to develop ‘favourite foods’ but was still open to eating. Then over a week or so, J just stopped eating anything that wasn’t sausage, chips or fruit (occasionally plain toast). We worked HARD on encouraging him to eat and we slowly started to add a few more meals but this took A LONG time. We noticed a pattern with J’s food. He was only eating dry food (not ALL dry food but most of it). He become more and more sensitive to textures and we noticed he was either seeking or avoiding certain sensory inputs. When he was 2 he was assessed by a psychologist and he was under or over sensitive to all the 7 senses he was assessed for.
Over the years some of the sensory issues have changed, but not dramatically. He’s learnt to tolerate more than ‘getting over it’. Resources such as sensory toys, ear defenders and blankets have helped. This took learning over time. In the initial stages we didn’t really know any of this and hadn’t linked J’s emotional outbursts to be over or under stimulated.
J is no angel. I will never pretend that every behaviour is autism based. Sometimes he is just an angry boy, or over tired, or being a pain in the backside – like every other child. He has times where he misbehaves. However, he was/is ‘different’ in the way he reacts to things. His outbursts have always be volatile and violent. J would throw things, clear tables, bite, punch and scream. He would also hurt himself by head banging, running into things or accidentally as result of throwing things. All sense of danger awareness and spatial awareness went out the window.
It was like he was a coiled spring and until he had finished ‘unwinding’ then he wasn’t going to stop…he couldnt stop. It was difficult at first to find the trigger unless it was something really obvious but over the years we have become atuned and can usually stop a meltdown before it happens. I’ve found it usually sensory linked (a noise that he couldn’t tolerate, something felt too wet etc) or social issues (one of the autistic traits is called ‘mind blindness’ where it’s difficult for a person to put themselves into someone elses shoes – they struggle to understand that what they are thinking isn’t necessarily what everyone else is thinking). This isn’t uncommon in children who are autistic and there’s more on challenging behaviour on the National Autism Society website.
As J’s language skills have developed so has his behaviour. He’s slowly getting better at talking about his problems which means an adult can help to ‘fix it’. It does depend on factors going on around him. We use sensory tools, symbols/visuals, quiet space he can be by himself etc to help regulate himself (think of a seesaw that he needs to make balance – if he’s up top he needs help to get down).
There was also concerning behaviour where J would go into ‘shutdown’. We used to jokingly refer to it as ‘a robot that has been turned off’. His eyes glaze over, he doesn’t respond and just seems to ‘stop’. It happens when he’s been so over loaded that he can’t deal with any more input. It happens a lot after nursery/school. We now know that when he gets home it’s time to give him a snack, ipad and blanket (which he’ll either wrap around him or put over his head). This gives him space to shutdown at a level where he isn’t totally checked out. When he’s recharged enough he’ll start to talk…or ask for more snack (he always gets hungry when he’s been overloaded). When J was 1-2 years old he would take himself behind a curtain, in a tent, under a table or under my jumper to have his time alone. You’d think he was falling asleep but actually he was just tuning out for a bit.
There’s a lot of other signs that a child could be autistic. When I look back at J as a baby, toddler etc I see more signs now that I missed back then. Some obvious such as his difficulty maintaining eye contact, others such as his ability to recognise patterns, logos and problem solve a young age were traits we found out about later. I speak to a lot of families who have children who are autistic. Every time we discuss signs and symptoms we find that we have many in common, but also many that are different. There is no set formula for autism. I have found that it’s more about how it affects your child and their daily lives which can mean the difference between autism and ‘age’, development issues or just personality.
Not every child who avoids eye contact is autistic. They could be shy.
Not every child who lines things up is autistic. It could just be fun for them.
Not every child who seems ‘behind’ is autistic. It could be a development issue.
Not every child who can recognise numbers by age 2 is autistic. They could just be a bright little button.
Not every child who is autistic will be a genius.
Not every child who is autistic will have eating difficulties.
Not every child who is autistic will prefer to play alone.
This is the difficulty with autism. It really is a spectrum and the above examples are just the signs that we were concerned about at the beginning. The list has grown much longer over the years. This is why it is important to speak to a professional if you have any concerns or niggles. They are trained and experienced. They have a team who will support them in assessing and make the diagnosis – if one is required. J saw a whole list of professionals over the course of a year before he got his diagnosis. We have continued to have a team of professionals to give us the tools and understanding needed to live life. J will be autistic for the rest of his and our aim is to help him learn to navigate it.
My recommendation is to get off google as it can be a scary place. Go to your GP, school nurse, health visitor, SENDCO, teacher, early years key worker/childminder.
I’d love to know your views. What signs/symptoms did your child first display? Did you find this post because you were searching for ‘Is my child autistic’? I’m happy to answer questions but I can only talk about our own journey. You can comment below or find us on Facebook, Twitter and Instagram.
If you’re interested to know more about our journey from referral to diagnosis check out our Autism Category and have a look through our previous posts, including our first ever blog post, published on the day of our first visit to the speech therapist. This was the first step in our journey.