Monday, 6 March 2017

Recognising the Early Signs & Symptoms of Autism in Boys & Girls

Ok, so I decided it was time to write this post.

I have a son (DS 8) and daughter (DD 9) - both of whom are formally diagnosed as having Autistic Spectrum Disorder.  It was a long and difficult journey to get both of them diagnosed, and I sometimes forget, having been fighting so long,  what it was like at the beginning and that there are many of you out there still at the start of this journey, or wondering if, maybe, this might apply to your child.

So, I will do my best to help by giving as accurate information as I can recall from our own experience. There's so much more than I could ever hope to cover in one Blog post, but hopefully this is a helpful start for some of you.

My son was the first to receive diagnosis - but it took 3 years from the start of the referral/ investigation to actual diagnosis.

With my son, there were signs from the beginning. Signs I, at the time, didn't recognize. He was a bright, bubbly, engaging, bundle of fun.  He wasn't unresponsive. He wasn't unaffectionate.  But he was under-responsive to touch - he did not enjoy light touch, stroking, tenderness.  He liked to be held, firmly. He liked to be swaddled. He like to be picked up and carried, everywhere, always. 

His fine motor skills were ahead of his age.  Infact he ate ably with a knife and fork well before his contemporaries.  It was the same with crawling, standing, walking.  All milestones we proudly hit ahead of time.  But he never stopped moving. He never stopped sensory seeking.  He was always pulling himself up something, putting something in his mouth and he did rock, and he would pull himself to the doorways and sit and bang his head into the door frame repeatedly if you did not intervene.  He was never distressed, he seemed to crave the sensory feedback.

He was loud, he was a loud baby. He had a loud cry, he called out a lot, it was like he desperately had things to say.  But speech and language was a problem.  We started Baby Sign at a young age.  I say we started Baby Sign, actually we watched Mr Tumble and he saved our lives!! Through Justin Fletcher, we learned to communicate with our struggling toddler.  We had stock phrases we learned - "The squirrel is up the tree" and "the tractor is red".  When a meltdown occurred, we would say and sign these phrases together, and just the fact he was able to communicate SOMETHING and be understood, had a remarkably calming effect.

Justin Flectcher's Something Special also helped us with outings and holidays.  We basically watched and re-watched the episodes, as both the children loved and responded to the programme so well, and did what he did.  We hadn't realized, at the time, why going to new places - or indeed anywhere, ever - was such an issue. But it was, it really was.  But thanks to Mr Tumble and his going out & about, we recorded and watched and re-watched those episodes and went to the places he went so that there was familiarity for the kids and we could use the sign language he used to aid communication at those places.

So yes, there were signs, that we didn't recognize.

Another sign was that both our children only ever liked 'real life' TV programmes.  They were totally disinterested in animation of any kind until they were much, much older - I would say age 5 plus.  Prior to this, it was Something Special, I Can Cook and Chris & Pui.  Anything without real life situations would not spark their interest.  

My son did not sleep.  And I mean, at all, ever.  The only time he napped is if he feel asleep on a feed. If he didn't, you could forget it!  As he got a little older, he would only motion sleep - in the pushchair, in the car, physically being rocked.  Once he was asleep you could not transfer him.  I used to watch friends, enviably, move their sleeping infants and tots and put them down in their cots for an hour.  How did they do this???  I remember my mother, and the health visitor, telling me I was doing it all wrong.  I remember being told to try controlled crying. It didn't work. I remember my mother coming and taking the baby, my son, from me one morning and trying to show me how to 'do it properly and not get myself in such a state'.   Four hours later, a broken woman, she came back down the stairs and asked me where my 'f***ing pushchair' was!  At least I knew then it wasn't me!

As he got a little older, toddler age, he was a joy. Totally happy to play for hours at your feet - any kind of sensory play - water, sand, mud, toy kitchen etc.  But he did not, could not, play with other children.  He didn't go through the terrible twos. He didn't push, snatch, bite like the others.  He couldn't understand why they did. It never occurred to him to take a toy off another child, or push ahead on the slide. Why would you?  And I watched, heartbreaking, his perplexed little face when others did it to him.

He had a whole and varied vocabulary but he needed me to translate everything for him, as I was the only one who understood it. In time, when he joined pre-school, he was referred to Speech & Language.  They worked with him on his sounds.  They immediately saw that he could not make eye contact, that he was distracted, that he did not recognize facial expressions and that he could not correctly sequence orders of events.  This SHOULD have been their cue to refer him for paediatric investigation (I didn't know that then).  They failed.  They gave me the details of a SEN website to look at and sent us away after 6 weeks when he could pronounce his g's 😖😖

At pre-school his key worker saw all I saw, but simply could not get her superiors to agree to refer him.  So I brought him in, kicking and screaming, day after day.  She would settle him, he would come home and it would all come tumbling out.  He would bang his head until his nose bled, he couldn't sleep, he would bed wet and cling and cry.

There were other signs.  Sensory issues with clothes. He would only wear stuff he could pull on or off. No buttons, zips or labels.  For over a year he wore the same Spiderman costume every day - like a giant security blanket protecting him from a world so loud and confusing.

He would choke when he ate - he would overfill his mouth to the point of choking.  He lost the ability to use a knife and fork and began to eat with his hands.  He could not recognize hot temperatures so would burn himself on food.

He had an utter disregard for safety - particularly around water. 

He would wander.

He would constantly have his back to you.  He would never respond to you calling his name.

He was tested for glue ear. Given gromets.

His eyes were tested. He was given glasses.

His kidneys were investigated. It was found he has a mild kidney condition so the bed wetting was to be expected.

He cried, a lot.  He complained of headaches and stomach aches, constantly.

He misjudged distances and frequently walked in to doors etc.  Similarly he would hold on to things all the time he walked around the house and complained of feeling like he was falling.

He cried, a lot.

He had physiotherapy intervention for 4 years for his hypermobility.  Eventually his, very excellent, physiotherapist signed him off - with a referral saying in her opinion there was more to investigate and that his issues were likely more due to ASD, ADHD or dyspraxia - or a combination of the three.  Her advice and request for referral was ignored.

He cried, a lot.

We started mainstream school.   All of the above issues, and more, continued.  As soon as he started school he was placed on School Action plus - I wasn't told.  He had daily 1-2-1 intervention to help with his speech and language and social understanding. I wasn't told.  I was told he was a good boy, a nice boy, a caring boy, obedient, sweet, kind.  He was, he is.

He cried, a lot.

The bullying started.  Other kids quickly realized he didn't understand the social order of things. He had trouble distinguishing between friend and foe, and what was social play and banter and when he was actually at risk.  I did start to get telephone calls - he had been hit in the privates, every lunch time 3 weeks in a row by the same boy.  Another boy had ripped his coat in half.  That same boy tore up a 3D pirate ship my son made in class - they praised my son for not reacting and for picking up another sheet of paper and starting a new one.  I died a little inside.  I cried, a lot.

Next his trousers were pulled down in the toilets - I didn't get a phone call about this, though the other mother did, and apologized profusely to me in the playground.   Some other boys held him down and stamped on his stomach and neck.  I went to the Head. 

And all the time he cried, a lot. He begged me to keep him at home.  I wanted to. I started to.  He had more and more time off sick with the headaches and the stomach aches.  We went back and forth to the GP who fired off endless referrals with seemingly endless rebuffles.  He spoke candidly to me, he could see the autism as clear as I could and his frustration almost matched mine at times.

Finally, he fired off a referral to a neurological specialist, in utter desperation for someone to help us.  He got a formal 'rap over the knuckles' and told to desist in these referrals. That the school said my son was fine and, after all, the school should know.....

So I sought a private referral.  I spoke at length to the National Autistic Society and the Dyspraxia Foundation.  I took him to have a private Occupational Therapy assessment - at a cost of over one thousand pounds.  With all this evidence, I managed to secure a private assessment.  The crunch?  It was going to cost three thousand pounds.

I cried, a lot.

I spoke to friends, considered Crowd Funding, looked at extending the mortgage, getting a loan.  An old school friend signed himself & his wife up to run a half marathon to raise money through sponsorship.  Would it be enough?

So I contacted the school - I asked how much of my son's Pupil Premium they would be prepared to allocate towards the assessment, since they were not using it to meet his needs at school.  I contacted the NHS direct and asked them how much of the private assessment they would fund, since the NHS had failed us.  My GP threw himself back in to the fray, not without risk to himself as he had been warned to desist in helping us.

I rallied, a lot.

And the combined force of all of the above, with a dogged refusal to Go Quietly Into That Good Night, resulted in an appointment with the paediatric developmental team at our local hospital.

This took 2 months.  After, basically, his entire life already.  He was 6 years old.

At the initial appointment the Doctor placated and fobbed off, but despite the lack of supporting paperwork from the school, I refused to leave the doctors office until they agreed, in writing, to assess him.  Reluctantly, they agreed.

In the meantime, my son suffered a catastrophic meltdown at his sports day.  I asked to take him home, and the Teaching Assistant from the class actually physically pulled him away from me, mid-meltdown.  Calmly, oh so calmly, I told her to take her hands off my son and I would not pursue her dismissal.  Then I carried my now barely breathing son to the office to get his inhalers, as he had gone in to a full on asthma attack.  I walked right by the Head and Assistant Head and they did not even help open the door.   I was refused access to the classroom.  I lay him down and tilted his head back in an attempt to allow air in to his lungs.  Another TA who knew us happened to pass through the reception area - she saw us, saw immediately what was happening and had his inhalers to us within seconds.  I think she may have saved his life.   I removed him from school after this.  This was July 2015.  In September 2015 he finally had a formal ADOS assessment on the NHS and was diagnosed with Autistic Spectrum Disorder.  At the assessment itself he scored 18/20 which means he is severely impacted by his autism.  The autism they'd all said he didn't have.

We were given a leaflet and sent away to get on with our lives.

And so to my daughter.  I also removed her from school at the same time.  She had had issues at school but it was assumed they were behavioural.  She was a very intelligent and highly verbal child.  She was on the Gifted & Talented register for every single subject, but she struggled so much socially.  She was a bright and engaging child, who was always the first invited to tea or parties - but friendships would quickly peeter out and I was frequently called to the school over incidents of lying or alleged incidents with other children.

I took her out of school because she wanted to come out. She was tired, she was burdened. She had meltdowns all the time. The rages at home were immense.  The battles over home work, getting dressed, anything - you name it.  She was broken.  She felt nothing she did was good enough and that, in some way, she was just wrong.   She was 7 years old.

Taking her out of school was quite simply THE BEST thing I ever did.  It stripped back all the external influences and I was able to see for the first time that maybe, just maybe she was struggling too.   Her autism definitely wasn't the same Colour as DS's but it started to occur to me there were signs.

The friendships - she is great at mimicking social situations, and has a wonderful 'bank' of learned phrases.  These should not be confused with genuine social interaction or understanding as once they are used up, she flounders - often becoming aggressive as she becomes more lost and exposed.

Once this clicked, I started looking at autism in girls, autism in siblings, PDA.  Oh my God, it was all there!  It wasn't me, I wasn't a bad parent, it was all there.

I started to think back to early childhood signs I'd just missed -

Eating.  Oh my Lord the issues with eating.  Even now food must be dry, separate on the plate, only certain colours, nothing wet, no sauces (except ketchup!) - must have a strong taste, ideally sweet.

Sensory Issues - totally unable to dress herself, appropriately, ever.  Could not distinguish between hot and cold. Intense dislike of certain textures against her skin. Unable to tolerate labels or buttons. Or socks!! Socks were crushing her feet, apparently, and felt crunchy.  The rages we used to have getting ready for school - and the utter confusion when we moved to Home Schooling and she simply could not choose appropriate clothing to wear.

Sensitivity to noise and light.

Unable to sustain eye contact but great at masking it.  Would blink, increased fidget, or lift her hand to shade her eyes and say the sun was in her eyes.

Forgetting how to do stuff.  Tasks she had previously managed with ease.  Or simple things like smiling. She forgot how to smile for a long time and would get extremely angry and agitate over this.

Talking in great streams rather than conversation. Repeating the same conversations over, and over, and over, and over.

Lining up and ordering her toys rather than playing with them.

Writing lists, lots of lists.

Saying NO - a lot!!

Bath time - oh dear Lord I don't even want to talk about bathtimes.  Hell in a bathtub!

So sensory seeking, all the time

Walks on tiptoes, runs EVERYWHERE

Total and utter disregard for safety and boundaries of any kind

Unaware of physical proximity - from the youngest age my daughter would never walk around stuff. If there was an obstacle in her direct path - a book or toy on the floor - she would just walk over it, as if she hadn't noticed she was there.  This became worse as she got older as she would literally walk in to physical obstacles in her path, including people, as if she was totally unaware they were there.

She walks backwards, all the time!

As I started to look back, so many things began to click in to place.  So, I went back to my GP and said "I think we have another one."   He took a very deep breath, bless him, and agreed.  But this time we were referred to CAMHS.  It took 6 months for that appointment to come through - and I'm convinced that the only reason it actually did is that she put a plastic bag over her head in her bedroom so I called the crisis line.   This was not a deliberate act to harm herself but a terrifying act of utter unawareness.  She had asked for a bin bag to tidy her room and when I went upstairs a few minutes later she had climbed in to the bag and was trying to do it up behind her.  Now we had talked about suffocation numerous times, but in her quest for sensory stimulation she had wondered what it would FEEL like, so with no thought for her safety or consequences, aged 9 years old and on the Gifted & Talented register, she climbed head first in to a plastic bag!

I shook, a lot.

The crisis line at CAMHS did indeed concede that this was now a crisis.  This pushed us up the list and we were seen a few weeks later for an initial consultation. 

It was still an enormous battle as, despite all my evidence, the GP evidence, the fact my daughter had already been under CAMHS for 18 months previously, the fact she was not in school was a sticking point for them. They had no precedent, the argued. The correct paperwork wasn't there, they couldn't tick their boxes.  So for weeks I argued, fought, bounced back.  I called them every Thursday for 3 months. After 3 months I said I would start coming to the offices every Thursday.  They knew I meant it.  We finally got referred for an ADOS.  The appointment came through for December (having received the initial referral in February). 

I talked it all through with my daughter, whom I had been very open with.   I explained that she had beautiful blue eyes. That she was born with blue eyes, that her blue eyes were part of what made her her.  I told her that despite this, we needed to go and sit in a room with two doctors who would look at her and say "Hmmmm, yes, I see it says here you think your daughter's eyes are blue.  Well, they look blue to me, would you say they look blue?"  And that both these doctors would look at all the papers I'd gathered from people who had seen your blue eyes and they would nod and make notes and ask her to do some tasks and then, eventually, they would say "Well yes, you're right, her eyes are indeed blue."   And we would smile, knowingly, take the second leaflet, the same as the first, and go and get on with out lives.

And that is exactly what we have done.


  1. What a harrowing account. Well done for writing it. It is disgusting how long it took to get referrals. So glad you are making progress with a lovely community - what a relief at long last!

    1. Thank you x
      Thank you so much for reading, and for taking the time to comment, and for your good wishes.
      BloggingMama101 x

  2. Another great blog from an amazing mother and generally wonderful human being.

  3. Thank you so much Bethany Pierson-Smith xx