Getting an Autism Diagnosis

On the 3rd of March 2022, we received a letter informing us that our eldest son, Max, has Autism Spectrum Disorder. The letter was the end result of a long process. I’m going to talk about that process from start to finish, in as much detail as I can.

This post would not have been possible without my wife's dedication to our 2 children, her persistence in the face of long odds, and her diligent note taking. Sophie, I love you.

# Prologue

This post spiritually follows on from this one. I ended that post by saying I’d like to write another post about the first months of parenthood. That never happened, because the first months of parenthood are an extreme test of patience and resolve.

Being new parents, we didn’t know what we were doing. Max was irritable, difficult to get to sleep, and dropped down to the 9th percentile for weight. This last piece of information was a shock to us, and to our health visitor, and led to the revelation that Sophie wasn’t producing enough breastmilk. Nobody’s fault, just the way it was.

To tell the truth, this was a relief. After we switched to formula feeding, Max’s temperament changed almost overnight. He was content, he slept better, I was able to help with feeding, and Sophie’s nipples were able to heal.

Max was 9 months old when the UK went into its first full lockdown of the COVID-19 pandemic on March 26th 2020. The week before the lockdown was announced, we had visited a local nursery and been given forms to fill in to confirm Max’s attendance. We were excited to get him spending time with kids his own age, and we were looking forward to getting some time off from parenting.

Instead, we all had to stay home 24/7 by law. I was in the fortunate position to already be working from home, and working in an industry that was relatively unaffected by the pandemic. But none of this helped Max’s social development.

I tell you all of this because it’s relevant to Max’s diagnosis. While we got his diagnosis earlier than most, a fact we are ever grateful for, it did take longer than it would have had there been no pandemic. We attributed a lot of his behaviour to having lived most of his life in lockdown.

# How we realised Max was different

Max had his first “settling in” session at nursery on February 8th 2021. These are short sessions, often only a few hours long, designed to ease your child in to the nursery setting. Max’s first settling in session didn’t go very well, a fact that when taken in isolation isn't unusual. He spent the majority of the time screaming, and we ended up cutting it short.

Despite this, Sophie and I settled into a good rhythm with nursery. Max went there twice a week. It was a good balance between cost, us getting time off, and Max getting time with his peers. But Max wasn’t taking to it, and one evening a member of staff took Sophie to one side and said Max “isn’t where we expect him to be developmentally.”

It's hard to describe how this made me feel. Is this our fault? Are we not parenting well enough?

Nursery's concerns were that Max screams a lot, can’t follow instructions, and his speech was less developed than his peers. They suggested it could be Max’s hearing, and they recommended we talk to our GP to set up a hearing test. We called our GP and had a frustrating conversation in which he asked us if we think Max has problems hearing. We explained that we had been recommended to get a hearing test by his nursery. But did we think he had problems hearing? I didn’t think Max had any problems hearing, but I didn’t want to say that because I am not a medical professional.

Nursery also recommended we contact our health visitor to ask for a developmental review. In our area, kids used to go through a developmental review at 2 years old. This changed in recent years, and it’s done at 3 years old now. The review is made up of questions that gauge things your child can and cannot do. At the end, you get a score. If you want to see what’s on it, you can search “ASQ:3 24 months” and you’ll find loads of PDFs, all very similar.

Max didn’t do well at this, we had to say that he wasn’t able to do most of the things they asked about. Because of his low score, we did another questionnaire called the ASQ:SE:2. This one focuses on social and emotional development. Again, Max scored low. It was the result of these two tests that led our health visitor to refer us to our local council’s special educational needs and disability (SEND) team. This happened on the 7th May 2021.

This referral included appointments with a paediatrician (which we were told would take a few months, but actually ended up taking almost a full year), speech and language therapist, and the SEND team themselves. The 7th of May was the first point at which it felt “serious,” and we started to suspect he may be autistic.

# Jumping through all the hoops

On the 12th of August we had our appointment with the SEND team. We’ll call her Janet. It took place at nursery, and the day before it Janet had been at nursery to spend time with Max and observe his behaviour. I remember messaging my boss saying I need to be away from work for “an hour or so.” The meeting lasted 4 hours. It was obvious that Janet had spent a lot of time with Max, and had taken detailed notes.

It was in this meeting that we asked “do you think Max is autistic?” Janet said yes, he probably is. We had asked other people this same question, because it had been on our mind since the ASQ, but everybody had been cagey about it. “Oh I couldn’t say”, “I’m not qualified to make that diagnosis”, etc. We appreciated how forthcoming Janet was with us, and the risk she took personally being open about it. She confessed in us later that a lot of parents don’t like hearing that their child might be autistic, so she wasn’t surprised that most people didn’t want to say.

After this meeting, Janet referred us to the Early Years SEND panel. It was decided by them that Max had special needs. It’s important to note at this point that we didn’t have an autism diagnosis. Help is based on need, not diagnosis. Autism or not, Max needed help with his development and our local council would give us that help regardless. Janet even went as far as to say that the diagnosis is irrelevant to the SEND team, he’ll get the help he needs based on what they observe.

On the 26th of August 2021 we had our first speech and language therapy (SLT) appointment. This was an introductory session, Max played with some toy cars while we spoke about his behaviours. One of the things we took away from this appointment was to put Max's toys into clear plastic containers that he would need to ask us to open for him. This helps to cement the need for communication. We still do that to this day, and we do believe it has helped.

On the 13th of September 2021, our special needs practitioner got in touch with us for the first time. We’ll call her Fay. She arranged “play sessions” with Max, these happened every few weeks from 22nd of September 2021 to 23rd of September 2022. In these sessions, Fay presents Max with toys designed to test him in different ways. Some of them require him to match colours, some of them shapes, some of them are things you play with with another person, and some are toys you aren’t meant to touch at all. All of these test how he reacts to situations, how focused he is, how well he appreciates and accepts playing with others.

Something those play sessions taught me is that playing with children is a skill. Fay was able to get Max to play in ways we would have said were impossible without seeing it for ourselves. She was able to get him to do things when she said so, and more crucially to not do things he obviously wanted to do. He responded to her extremely well, and it was a joy to watch her work with him.

We had heard it previously from Janet, but Fay confirmed it: Max has no difficulty learning. The way he learns is different to most other kids, though, and will benefit from a more tailored approach. Looking back, it is probably around this time we started forming our opinion that Max should attend a special needs school.

On the 30th of September 2021 we had Max's first hearing test. The way that they wanted to test Max's hearing was with a set of stacking cups. The doctor would demonstrate making a noise, then putting a cup onto the stack. Then she would make the noise again and add another cup. Then she would try and get the child to do the same. Max, however, wasn't at the level of understanding required to complete this test.

The backup test that she had involved a shelf of toys. The shelf was a grid, like a set of IKEA Kallax shelves, and in each square was a toy that could make a noise. The doctor would trigger each toy to make a noise and the idea was for Max to look at the toy that made the noise. Unfortunately, Max was terrified of the toys and screamed uncontrollably upon seeing them.

After this, the test was rescheduled for January 10th 2022. This time they tried to have him listen to a cartoon on the television while they put a sensor in his ear to take some measurements. He refused to let them put the device in his ear long enough to get any readings. They tried the first set of tests again, but he reacted the same way he did before. A third test was scheduled on February 3rd 2022.

This time they wanted to try and do the test while Max was asleep, but we weren't able to get Max to sleep at the time of the appointment. However, to everyone's surprise, he went in to the doctor's office and did the stacked cup test immediately without prompting. He passed with flying colours, ruling out that hearing was causing his language difficulties. To this day we don't know what changed.

On the 17th of February 2022, 6 months after the first appointment, we had our second SLT appointment. We had to chase them up to get this to happen, as we had not heard back from them. In this appointment we learned about "transition objects", objects to help children go from one activity to another. We used bubbles to help get Max to get in the bath, and a toy game controller to help get him in to the car. He still uses the toy controller today, though he has grown to enjoy bath time enough to not need the bubbles.

On the same day, in the afternoon, we got a phone call telling us that there had been a short-notice cancellation with the paediatrician and would we like to do our appointment on the 20th of February? You're damn right we would! We had been waiting for this appointment since May 2021, and had heard from friends that waiting over a year was common. Some people wait more than 2 years. To get seen in less than a year is rare.

Janet, our SEND coordinator, had compiled all of the paperwork from our other appointments and sent them to the paediatrician. She had also let the paediatrician know that we were receptive to a diagnosis (not all parents are). Unfortunately, for whatever reason, this documentation didn't get to the paediatrician ready for the appointment. The paediatrician had moved from another area and wasn't fully set up with her email yet.

However, with what Sophie was able to find on her phone, and after observing Max for about an hour, the paediatrician told us she felt comfortable giving him a diagnosis of autism there and then, with an official letter to follow.

# Wrapping up

Getting an autism diagnosis before the age of 3 is uncommon, and I have to express appreciation for everyone involved in the process. While the help given to children should be based on needs alone, we have found it helpful to have a recognised diagnosis.

What I plan to write about next is the process we went through to get Max in to a special needs school, a process which came to an end just a few weeks ago. We are ecstatic.