Autism Assessment - Theo's experience

If you are wondering how to get an autism assessment for your child or what it entails then you can get some insight here by reading Theo’s journey to diagnosis. 

A bit of backstory: 

Theo was premature, he spent his first few weeks in an incubator and when he was allowed to come home, he was small – he didn’t even fit in the smallest size of baby clothes – the Neonatal unit very kindly supplied us with a crochet cardigan for him to come home in. For this reason, we weren’t concerned in the first three months when he wasn’t hitting his milestones. 

Theo's first picture at home

Aside from his development Theo had other issues, his stomach was always swollen, he cried all the time, he was sick after every feed and he was covered in rash. When we took him to the doctors we were advised it was reflux and he would get better with age. 

We weren’t happy with this and ended up paying for Theo to see a private doctor (Mr SEND a friend had private medical with his work luckily) who advised allergy tests and this is how we found out that Theo was allergic to the protein in milk.

We immediately moved him onto a special milk formula that we had to get from the local pharmacy. 

The private doctor saw Theo every two months from when he was 3 months old until he was a year old. This was the point that the doctor began to get more concerned that Theo was still delayed. 

Theo at his party

At his first birthday, there was no social smile, there was no baby babble, there was only silence. He had no interest in his toys, his food or his guests. In fact, he looked miserable for the whole time. People often commented that he looked and acted much younger than he was.

Getting Referred:  

When he was 15 months old, I’d had enough, I took him to the NHS GP and explained my concerns. Initially there was pushback, they didn’t want to refer him because of his age. I knew that the waitlists were long in our area and by the time that he was seen he would likely be over three. The doctor agreed with this and as I had documentation from the private doctor as well as a report from a private speech therapy assessment he agreed to refer him. Theo’s older sister was also on the waitlist and had been for a long while so I assumed it would be a long wait until we heard from the Child Development Centre. 

Theo at 1.5 years old

The Assessment: 

We got the letter when Theo had just turned two inviting him to a pilot study they were trying at our hospital, it was called the One Stop Autism Assessment. This was a two-hour appointment which incorporated the initial appointment with the assessment appointment and at the end of it you were given your answer.  

On the day we went to the hospital I was so nervous. I knew that Theo was likely autistic but it’s different thinking it as a parent and having it confirmed by a professional. The doctor commented that Theo shouldn’t really have received a letter as he was too young, however we were lucky the doctor agreed that there were significant indicators of autism and from just looking at him in the waiting room she decided to proceed with the assessment. 

In the room was a doctor, an early year’s practitioner, myself, Mr SEND a friend and Theo. For the first hour the doctor took a very thorough background starting from birth all the way to his current age. She asked questions about his ability in different areas as well as listening to our concerns. The early year’s practitioner tried to interact with Theo in this time with toys, books and bubbles. 

During the second hour the doctor observed Theo ‘playing’ and asked any further questions that she had. This part for us only took forty minutes and she’d gathered what she needed to. We were asked to wait in a quiet sensory area for ten minutes whilst the doctor and practitioner collated their information. 

The Results: 

Their observations were: 

• Theo gave no eye contact or social smiles to the practitioner  

• He did not respond to his name or initiate play.  

• He has no verbal language or ability to communicate.  

• He is completely reliant on the support of adults for all self-help skills. 

• He was observed stimming in the session. 

• He was observed to be globally delayed in his development in all areas. 

• He was observed getting upset and lacking in regulation skills. 

  
  

  

  Theo at 2.5 years old 'saying cheese'

  The doctor explained to us they were diagnosing Theo at this time with Global Developmental Delay and also a working diagnosis of autism spectrum disorder to be confirmed in a short appointment around his third birthday if nothing had changed. We were offered genetic testing for Theo which we accepted and the results from that took about three months, it was clear – no genetic abnormalities. To be honest, it was luck that allowed Theo to be diagnosed so early and we were privileged that we had access to private healthcare at a reduced cost otherwise we wouldn’t have been able to do it.  

Tips for others:

1. Gather as much evidence as you can before you go to the doctors for referral (videos, private appointments, speech and therapy assessment, occupation therapy etc) 

   
   

2. Don’t let them dissuade you, push for the referral, quote evidence and timescales of waitlists in your area 

   
   

3. Take another family member or someone who knows the child well with you the to assessment 

4. Think about the different areas of development and what your child is struggling with specific to this e.g. speech and language are they not saying anything or are they struggling in a specific area such as conversational understanding or self-advocacy. 

Good luck with your child's autism journey. If you have any questions about the assessment experience please comment below.