What does ASD look like, to you?

When my son received his ADHD diagnosis, I was unsurprised. This is what we had expected, based mainly on the reports of his teacher on how he behaved at school.  He is not what I would have considered to be a typically ADHD child; he’s not particularly hyperactive or inattentive. As far as I was concerned, if the ADHD diagnosis meant we could ask for extra support for him at school, in the form of additional resource hours, then great. This would be vital for him in not falling behind at this early stage.

But I knew there was something more. The ADHD diagnosis didn’t explain his behaviours at home. The meltdowns, the anger, the low mood….so I made an appointment with Dr Google. My searches of course led me to pages upon pages of symptom spotting for Autism Spectrum Disorder; many of which did not fit my son. He does not have a set routine which he must follow, he does not have obsessive hobbies, he does not talk in a monotone voice, nor have any particular physical tics or habits. I did not think my son was Autistic, based on what I thought Autism looked like.

jake_logs

But then, I came across a list of ‘other symptoms’. These might, apparently , include:

  • Impulsivity (yes)
  • Aggression (oh yes)
  • Causing self-injury (yes)
  • Temper Tantrums (yes)
  • Unusual mood or emotional reactions (yes)
  • Unusual reactions to the way things sounds, smell, taste, look or feel (yes, yes, yes and yes)

The main problem we were having at home was with anger and tantrumming. Extreme emotional over-reactions to the smallest of slights or incidents. I cannot explain to you the rages he would get in to. Such rage, I was afraid of him, afraid for him. Not a day went by when there wasn’t some kind of cataclysmic meltdown, and on weekend days there would often be more than one. I had no idea what was causing this, save for the fact that it must be something we had done. For how could a 6 year old have so much anger inside him?

I cried when he was diagnosed with ADHD. Not because of that diagnosis, but because I knew it didn’t explain things for me. The doctor in charge was happy to send me with off with a list of reading materials and a handout on medication. I felt abandoned. Our family was sinking and they were giving us a list of websites to look at. This was not enough. Armed with the screenshot of the list of ‘other symptoms’ I asked them to carry out an ADOS test. The social worker leading on his case said , yes, she would but that she would expect him to do quite well.

Previous readers will know he was diagnosed with ASD, just over a month ago. On the mild to moderate scale, she told us, what used to be referred to as Aspergers syndrome. (But now, is not. My reading to date hasn’t brought me to the reason for this.)

ASD might not look like what you think it looks like. For our boy, it looks like anger, it looks like naughtiness, like sensitivity, like irritability, like over-reaction.

It looks like hitting his best friend out of impulsivity, and then, seconds later, being inconsolable at having hurt his friend.

It looks like stepping out of the front door into a bright sunny day and wailing,  for far too long , because it is too bright.

It looks like lashing out at his family the minute after returning home from School, because home is his safe space and School is so stressful for him.

It looks like crying and shouting as you scoot your way around the park, because it’s too cold and you want to go home.

It looks like having the best day ever, and still being sad or irritable.

It looks like never being able to predict how he is going to react.

It looks like being overwhelmed on Christmas Day and retreating to a quiet space.

It looks like misbehaving on a family holiday because it’s out of routine.

It looks like not quite getting the joke.

It looks like so many things, that I did not think it looked like.

cropped-img_0561.jpg

Twice in the last few months I’ve had people who deal with my son in their professional lives – one a childminder at his after-school care, and the other the provider of a sports programme – complain to me about his behaviour. He’s ‘hard work’, or disruptive, or un co-operative. Yes, he is all those things. As all 6 year old boys can be. It’s easy just to shrug your shoulders and label him ‘the naughty child’.  Which makes me wonder, when should I tell people about his diagnosis ? ‘Hi! This is Jake, he has ASD and ADHD.’ I don’t want that to be all there is about him, and yet I want people to understand him a little better. I don’t want to make excuses for bad behaviour, but he is not acting out of malice.

I want to explain him. I want people to love him. He is bright and affectionate and thoughtful and serious and exuberant.

ASD is a spectrum, on which people sit in various places, meaning everyone with an ASD diagnosis will present differently. But this is what it looks like for him, and for us. So maybe this will help you if you think your child reacts unusually to things. Or if your friend has a child who always seems to be in a bad mood, or is always getting into fights. Or if you are a childcare worker, and there’s one child who is ‘hard work’ or presenting challenging behaviours. Sometimes it pays to look at little deeper.

It looks like so many things, that I did not think it looked like. 

 

Advertisements

22 comments

  1. Over Heaven's Hill · · Reply

    Thank you so much for sharing this insight into your little boys life Beth. I hope that his teachers and those he’s in contact with daily will appreciate him and how he can find something difficult, that you and I take for granted. You are a fantastic mum, showing how you understand your son. I hope that with the diagnosis, the support he gets, helps to show his true colours and personality.

    Liked by 1 person

  2. Excellent piece, and I’m loving your images

    Like

    1. All photo images credited to Husband , I should clarify !

      Like

      1. He’s good a good eye

        Like

  3. Gah can you edit that

    Like

  4. Great post! My son has ASD too, getting the diagnosis definitely helped us as he’s getting the help and support he needs from school and his team. The reason for not using Asperger’s as his diagnosis is because the classification of autism has changed, basically under the new classification if you are diagnosed with autism (or what would have been Asperger’s which is autism without speech & language difficulties under the old classification) then the diagnosis given is ASD. It only came in the last year or two, and sometimes in the report the psychologist will detail what level in the spectrum the person is at e.g. mild, moderate, severe.

    Like

  5. mackenzieglanville · · Reply

    I think this is such an important post to write and share I wish all teachers and child care workers could read this to help them understand that you can not label all children as ‘naughty’ like you say you need to look deeper.

    Like

    1. Thanks , my worst fear is that people will think he is naughty and write him off.

      Like

  6. This is a great post, well done for being brave enough to discuss YOUR feelings about it. I hope things get a little easier now you have the diagnosis

    Like

    1. Thanks Lianne, with knowledge comes greater understanding !

      Like

  7. lynnepearson1 · · Reply

    My son was diagnosed with aspergers aged 8. We fpu

    Like

  8. lynnepearson1 · · Reply

    Oops……we found that things went a lot better when we told people about his diagnosis and briefly what that meant for him and what they could do to help. Every now and again I would think things would be fine if I didn’t disclose his diagnosis but invariably I would regret staying silent.

    Like

  9. […] written about receiving his diagnosis (The Diagnosis), and how ASD presents itself in my sons case (What does ASD look like, to you?). I’ve written about how my overriding emotion on receiving his diagnosis was relief: relief that […]

    Like

  10. You have just described my boy. We are waiting for our appointment date with a paediatrician. Numerous professionals have already told me they suspect Aspergers. I really don’t know how to feel. I feel a fraud for googling, researching, and scouring the net for blogs. im so glad I came across your blog though. Xx

    Like

    1. I’m so glad this could be of help to you . It’s difficult because for us a lot of symptoms just look like naughtiness, now we understand it all so much better it all makes sense. I hope you don’t have to wait too long for your appointment

      Like

      1. Hopefully the appointment won’t be long. My GP is trying to fast track it and is Faxing all the paperwork from school and from my support worker. We thought Juniors was just down to naughtiness, but his obsession and need for control is totally getting out of hand. How long did your diagnosis process take?

        Like

      2. We were lucky that it happened really quickly (am in Ireland) only around 6 months .

        Like

  11. Thanks for sharing this. I found it great through hard to read. We too have the meltdowns. My son found Christmas hard and it’s often hard to explain to other people how he behaves. My son is non-verbal too so he can’t exaplin his own feelings.

    Like

    1. Meltdowns are the worst . It seems you just have to let them happen..once one is on its way there’s no stopping it. It must be terribly hard on you all if your son is non-verbal . Life is tough; it’s great to connect with other mothers who understand. Thanks so much for reading .

      Liked by 1 person

  12. Lady Nym · · Reply

    I do sometimes wonder if there are several conditions/disorders we lump together under the term ‘ASD’ because we’re not quite at the stage of understanding them yet. ASD can look very different in different people. I know I often get told Tyger ‘doesn’t look autistic’ or people ‘would never have known’ so he clearly doesn’t fit whatever stereotype they have in their head of what an autistic person is like. When I mention the fact I’m fairly certain I’m also on the spectrum people are even more shocked. It comes in all sorts of shapes and sizes. Great post.

    Liked by 1 person

    1. I have been pondering whether the combining of various conditions into the ASD bracket is helpful..but feel I don’t know enough about it to be sure . A lot of people really don’t understand what you mean when you say ASD. Thanks for reading and thoughtful comment.

      Like

  13. […] Despite recognising the symptoms of Asperger’s in him, and having requested the ADOS test which diagnoses ASD, he did not fit my opinion of what a person with Autism looked like. […]

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: