I am the proud father of 4 boys, my eldest and youngest are both on the Autism spectrum. They are both as different as you could imagine, which reminds me of the great quote:
“If you’ve met one person
with autism, you’ve met one person with autism”.
This is so true as the spectrum is vast and that is what makes it so difficult and worrying for any parent to identify when their child shows signs of autism.
I'd like to share our story of how we came to find out our eldest boy was on the spectrum and hopefully this can help others.
My eldest boy is a surviving twin; his sister sadly didn't make it to join us but is still a big part of our family. He was born prematurely and spent time in an incubator.
Our pain at losing our daughter was compensated by the sheer joy of having our beautiful little boy. He was now our world.
He was a fighter and was soon ready to leave hospital. It was nerve racking as first-time parents taking him home. I remember feeling so proud walking out the hospital with this little bundle wrapped up in a car seat.
When we reached home, and we placed his car seat on the sofa my wife and I just looked at each other and thought what do we do next?
As he was our first child, we had no reference point to judge milestones. We just got on with it as we all do and enjoyed life with our new baby. It was my wife who initially had concerns, as despite being a beautiful boy, he was what was described as a floppy baby and sometimes distant.
We put this down to being premature and just muddled on.
He suffered from terrible reflux and did not sleep well. We asked a number of Doctors for help and tried every milk formula on the market and bought numerous types of baby bottles which were designed to aid feeding. No Doctor seemed to help, one even saying he would grow out of it.
Thankfully, we came across a great paediatrician after about 8 months. He noticed the pain our boy was in and diagnosed Acid reflux as the cause of his discomfort and irregular sleeping pattern. He prescribed Gaviscon along with specialised medication and our child seemed to settle, thrive and sleep at last. God knows what pain our poor boy had suffered as we went from appointment to appointment.
He took time to crawl, but he managed, he took time to walk but he manged eventually, but the words didn’t seem to come, and we started to notice behaviour patterns that worried us.
When we took him out in his buggy, he would become hysterical if we entered certain shops. In hindsight, this was a sensory issue, but we didn't know at the time, we just thought it was a tantrum and we again muddled on.
When we visited my parents, if we didn’t take the exact same route he would again go into hysterics. When we look back this was of course a comfort mechanism and any deviation resulted in anxiety.
His diet had initially been like any other child, but as he grew, he only wanted bland foods, such as crackers and bizarrely salt and vinegar crisps, which he still craves even at 13!
This led to horrendous constipation, which caused our beautiful child more frustration and pain.
He also began to flap his hands when excited and we started to worry. While we both thought something was wrong, we didn’t want to believe it.
Our biggest red flag was when he started playing with toys, he would line them up in a row and become especially agitated if one of us moved them out of the straight lines he had created.
As no words seemed to be coming and eye contact was very poor, we decided it was time to seek more help. This was not easy, but we managed through perseverance and not taking no for an answer to get a referral to a child psychologist.
She was a brilliant woman who opened our eyes to the world of the autism spectrum.
Our initial conversation with her has stayed with me. Even now years later, I remember her saying to me everyone is on the spectrum it’s just where they are that matters.
She began to work with our boy and in time she told us what we already knew but dreaded to hear that our beautiful child was in her consideration on the autism spectrum with developmental delay.
When you hear these words, weird thoughts go through your head, will he ever get a job, will he ever marry or be able to look after himself when we are gone?
After years of experience, in reflection, what I should have been asking myself is "how can I ensure he will be happy and healthy".
Still in shock, my wife was the first to tentatively start researching what this all meant.
She was going to the library every day, reading as many books on Autism as she could find. One morning she was sitting reading and she looked at our wee boy playing on his own on the floor. It was then she realised that she and I needed to spend less time researching about autism and devote more time to him. We needed to get to know him and find out what was happening in his little world.
This was a true light bulb moment for us.
We started to put a plan in place with the necessary professionals fighting for pre-school places and planning for his education.
I was surprised at the number of professionals involved from Dietitians, Occupational therapists to Speech and Language therapists.
It seemed our life was now about appointments, but we didn’t care, rather than muddling along we had support and a plan in place to help our child.
It is a gut-wrenching diagnosis to hear at first. But it’s not the end of the world, just the entry into a new environment, where you learn to celebrate the differences our children experience not the disability that some perceive they have.
I’d urge everyone who has concerns about their child’s development to research the signs of being on the autism spectrum and this may help:
What are the signs your child may be on the autism Spectrum?
The autism diagnosis age and intensity of autism’s early signs vary widely. Some infants show hints in their first months. In others, behaviours become obvious as late as age 2 or 3.
Not all children on the autism spectrum show all the signs. Many children who don’t have autism show a few. That’s why professional evaluation is crucial.
The following may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of the following, ask your paediatrician or family doctor for an evaluation right away:
By 6 months
- Few or no big smiles or other warm, joyful and engaging expressions
- Limited or no eye contact
By 9 months
- Little or no back-and-forth sharing of sounds, smiles or other facial expressions
By 12 months
- Little or no babbling
- Little or no back-and-forth gestures such as pointing, showing, reaching or waving
- Little or no response to name
By 16 months
- Very few or no words
By 24 months
- Very few or no meaningful words, two-word phrases (not including imitating or repeating)
At any age
- Loss of previously acquired speech, babbling or social skills
- Avoidance of eye contact
- Persistent preference for solitude
- Difficulty understanding other people’s feelings
- Delayed language development
- Persistent repetition of words or phrases (echolalia)
- Resistance to minor changes in routine or surroundings
- Restricted interests
- Repetitive behaviours (flapping, rocking, spinning, etc.)
- Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colours
I hope you have found this blog useful and please leave a comment.