A primary school teacher told me they thought testing shouldn’t be done until around age 7/8, but by that time the child could have been struggling in school for a few years.
For over 2 years we had heard the word autism and it was affecting our lives so I asked for the assessment to be done. He was 4.
That night I started to panic – I called the paediatrician back the next day to cancel the assessment, but she wouldn’t let me. She was very stern, I really didn’t like her! Looking back, I needed her to be stern with me, I just didn’t know it at the time.
Then came the wait for the appointment letter. It finally arrived. I felt sick. I couldn’t eat, couldn’t sleep, couldn’t talk about it to anyone. I was petrified of what was going to happen.
The assessment process is made up of 3 appointments:
- Meeting with parents
- Meeting with our son
- Results meeting
1. Meeting with parents
We brought my sister with us. She is a primary school teacher and has had autism training so we needed her for advice.
It was only our paediatrician at this meeting and she went through a questionnaire with us. This had questions like:
- How does he react in situations? Many situations given and we were to answer what he would do, or agree/disagree if this is how he would react
- Does he share?
- Does he take turns?
Alot of the questions I paused before answering, and the paediatrician said if I had to think about it then the answer is no, but I said I am thinking of when he was in that situation and remembering what his reaction was.
The questionnaire was very autism driven. Questions on situations where someone with autism would struggle. It was hard to answer as you need to be honest but you also don’t want your child to have autism.
We came out the meeting, which was it around 45 minutes, not knowing how it went at all.
2. Meeting with our son
We knew this was going to be tough! Luckily this was in the room where we always meet our paediatrician so our son knew the room, but we then had to leave him in this room and sit outside, and I knew he wouldn’t want to be left alone.
The meeting with our son was with our paediatrician, our speech and language therapist and an autism spectrum specialist. They would go through a series of tasks and games.
We sat outside the room and all we could hear was “no, no, no, no” I knew he wouldn’t do anything. On the plus, he was communicating that he didn’t want to do it.
Our paediatrician came out a short time later to say they would go visit him in nursery instead as it wasn’t working.
Only the autism spectrum specialist went to visit nursery, and she told his key worker that they never go to see nursery during the assessment process. Is this a good thing or a bad thing?? No idea!! She chatted to him and played with him and nursery said he was his usual self. Is this a good thing or a bad thing?? No idea!!
3. Results meeting
I walked in the door thinking, whatever happens next is going to change our lives forever.
We took my dad with us. I know after the meeting that he would ask me a hundred questions so it was better he came to hear everything first hand and ask anything he wanted. Also, we needed the support.
We all sat down looking at each other, and I’m thinking, just say it. I’ve spent over 2 years worrying about this and in the next minute I’m going to know what I’m dealing with.
They got straight to the point. “There is no doubt, he has autism”
My heart broke.
All I wanted was to be a mum and have a son to do everything with. But now I can’t. He won’t be able to do things normal kids can, we won’t be able to go anywhere, do anything. Everything I thought about autism is going through my head.
That is not my son though. I know him. His speech is poor, but he has learned other ways to communicate. He loves mummy cuddles and snuggling. He looks me in the eye all the time.
I don’t understand.
The paediatrician keeps talking but I can’t think of anything, tears dripping from my face. All I can think about is the life my son is going to have, and the difficulties he is going to face.
The paediatrician then says she signs us off now – WHAT???!!!! Eh, no! She agrees to have one more appointment with us in 3 months once we have our head round everything. In the meantime, she will get us on the list for a parents course and refer us to the carer’s centre.
We leave the room in a daze. We told my mum and sister, but I’m not ready to tell anyone else. I’m not ready to talk about it or have anyone feel sorry for us. Even now, not many people know. Only my 2 close friends in work know. If you see him and hear his lack of speech you would know something wasn’t quite right but actually saying the word autism out loud is a massive struggle for me.
So now the fun begins! Today is the first day and we will get the support in place that we need.
It’s October 25th so we decide we need to enjoy Christmas as best we can and tackle what we need to do in the new year.
I have found the diagnosis the key. It is what we needed, and I am so grateful to the paediatrician for not cancelling the assessment when I was in a state of panic. I really didn’t like her during that whole period, but when we had the follow up meeting in January, I gave her a big hug. I will always be in debt to her for forcing me to do the assessment.
Super Autism Mum 