Today I’m sharing our family autism journey story with you. I’m taking you through from early symptoms that I noticed, through to getting an assessment, how the assessment process went, to diagnosis and through to where we are today. Keep reading or click the video below for our story, plus answers to questions that I am sure you have about autism and how it gets diagnosed.
Table Of Contents
Why am I writing this now?
I recently shared on my Instagram stories that my five-year-old daughter, Bella, had been for an autism assessment. I was talking about what led us to that point, signs and symptoms I had noticed, the difference I’d noticed between her, being a girl, and her brother with autism, how I felt about it all and how it all went. (I will discuss exactly how that went in this post and in the video below, so stay tuned).
Following those stories I had so many questions about autism flooding in from so many parents who felt that they are in a similar position and have the concerns about their own children.
Although I already have lots of content about autism, both on my YouTube channel and here on the blog, I had so many questions coming in and I thought the best way to answer as many as possible is by sharing our story.
I will try and cover as much as I can. If there are any questions that you still have after you’ve read this article or watched this video and you still think that there are any gaps please leave them in the comment box below and then I will try and get to those in future content.
Disclaimer
Before we get into the real story I just want to remind you that I’m not a doctor. I’m just a Mum who has children that have been through this or who are going through this at the moment. This is my all just my own experience and if you have any concerns about your own children, as with anything at all, please do speak to your own doctor.
I will share with you the process that we went through but it can vary definitely from country to country, and even from county to county when you are dealing with different health trusts boards. What I am sharing was applicable where I live at the time that we went through it but please, speak to your own doctor for the most accurate advice.
Okay, now we can get into the story & it starts with William.
William’s Story
William is 7, nearly 8 at the time of writing this. With hindsight, William was showing signs and symptoms of ASD before I really became aware of them or concerned about him.
Hindsight is 20/20, isn’t it?
When I look back with all that I now know and all I’ve learned now there were signs being exhibited that I really didn’t pick up on. Perhaps I would have spotted them sooner if I’d known then what I know now, but I guess that’s just parenting all over, isn’t it?
While autism is a spectrum, with everyone on the spectrum exhibiting their own unique set of symptoms, you can check out my 9 Signs That Your Child May Have Autism post for a general guide as to what to look out for.
William was a very contented toddler
He was also very rigid in his ways.
Take food, for example. We started with baby-led weaning and he ate everything. His preferences then narrowed down and down till he had a very healthy but very specific diet. He would eat the same breakfast, the same lunch and the same dinner every day. Although each meal was healthy, so he was receiving an overall balanced diet, he would not deviate even slightly from these set meals.
Everything had to be the same, from the food itself to the way the food was cut up to the plate and presentation.
It became so extreme that when we went away in our touring caravan to France for 2 weeks, I had to pack meals that I had cooked and frozen for him so that he didn’t starve.
A side note about terminology
When I talk about autism I do like to say that William “has autism” as opposed “is autistic”. I see autism as a part of a person as opposed to the only thing about them.
When I talk about children or adults or anyone at all who are not on the autism spectrum who do not have autism, I would say that they are neurotypical. For more information and to better understand autism terminology, read my How To Talk About Autism post.
Now back to William
As I said, he was a really lovely, happy child, but he had these really specific needs that stretched far beyond food.
Buying shoes was another huge cause of distress
He would become so upset if we attempted to put anything other than a very specific pair of navy canvas summer shoes with boats on them on his feet, that he would melt down completely. What ended up happening, is that I would end up asking the sales assistant to bring me a larger pair of the shoes that he already had so that I could pass them off as his and we could get out of the shop and calm him down.
Not only would he only wear this one pair of summer shoes, come rain or shine or sleet or snow, but given any opportunity, he’d take off his shoes. The second we went indoors he would take them off even if we were just the post office.
He was terrified of wrapping paper
It was not just the wrapping paper itself but he was given a toy it that had come out of wrapping paper, it was as if whatever had come out of the paper had been poisoned too. He wouldn’t go near it.
He was very young at this stage, coming up to two. He was so terrified of wrapping paper that we couldn’t wrap anything we couldn’t show him s anything that was being wrapped, even for someone else.
He used to hate getting his hair cut
If we went to like children’s parties or toddler groups he wouldn’t join in, he would just do laps around and around the room.
He didn’t much eye contact
He didn’t make an effort to communicate with anyone at all, other than me, really. He would barely even acknowledge his Dad or older brother.
It’s crazy to think of how far William has come since then
Thinking about it now you know it seems like a million years ago because now he’s so very different. He wears shoes, gets his hair cut and loves wrapping paper and parties.
Just because we have moved past those particular phases, doesn’t mean autism has gone. He’s coping so weel now with all we have put in place for him, but it’s crazy to think of the struggles that we have overcome to get him here.
The fact that he is very bright meant that it still went undetected
William flew through his 2-year check with the health visitor with flying colours. When he stood up and recited the alphabet, she replied with “Clearly no problems here then”.
I feel it’s important to mention…
A lot of people think everyone with autism is exactly bright or gifted, which is not necessarily the case. Some people with autism are gifted some neurotypical people are gifted but not all people are gifted. Children with autism are not automatically super intelligent or gifted. William is lucky that he is exceptionally bright.
William could read quite fluently before he started school which was a couple of months after his third birthday.
Children who have autism but don’t have additional learning difficulties would be far harder to pick up and detect than children with other delays.
So William through flew through his 2-year check, with hindsight I can now see there were a lot of red flags at the time. As he was so advanced for his age in some areas, there were no concerns from the health visitor and he was always really happy if he was with me.
Routine helped William
I found that routine worked so well for him. You will have heard me talk about routine and why routine works so well for all children especially if you’ve got more than one child to juggle.
I really leaned into the routine when my eldest was full-time school and I had William at home as a baby. The only way I could make our lives work around school runs and other demands on our schedule was to have Will in a daily routine.
During the course of William’s autism assessment, the doctors said that the routine which we followed would naturally have helped him, and had I been more of a “go with the flow” Mum, as I was when I only had my eldest, he may have struggled much more.
Then came school
When William started school we had a little meeting with his new teacher. I explained that I was concerned because I didn’t feel he was ready for the classroom environment.
I said explained that he could already read but she’d struggle to get him to sit down join in and keep his shoes on.
I made a flippant remark about him being somewhere on the spectrum and she said she would keep an eye on him.
A few weeks later, I was called in for “a word”
“I think you were right,” she said, “I think we need to start going through the autism diagnosis process”.
Well, I went straight into denial.
I spent 48 hours in researching everything else that it could be and edited that he didn’t have autism, he was just gifted, because it said so on the internet and it’s what I wanted to believe.
I called the Health Visitor and shared my “findings”, which she agreed sounded plausible.
When I went back to his teacher with my “verified by the health visitor” research, she gentled said, “No, you were right the first time”.
That was quite hard to hear
Even though I knew in my heart of hearts that there was something going on, it was still quite hard to hear.
I realised from that point we need to get William assessed as soon as possible.
Getting an assessment is a notoriously long process
Where we live, age 5 seems to be the critical age when it comes to ASD assessments. Children assessed before age 5 go through the health system. While this can still take a long time, it is so much quicker and easier than option 2.
Children over the age of five would be no longer under a health visitor and would go through the education system.
Compared to the health system it is much slower to get a diagnosis thorough the school system as there is not as much funding available and waiting lists are long.
I don’t know if this is the same where you live but check with your school and GP if this cut off age exists where you are.
We were lucky
William’s difficulties were picked up when he was 3, so he went through the health system.
Although not as bad as if we’d left it until he was over 5, the waiting list was still really long.
I was desperate for William to get the help that he needed, so I managed to track down the phone number of the secretary of the consultant that we had been referred to. I phoned that poor woman every day. I was very polite about it all, I was not rude but I was persistent.
It must have worked because at seven o’clock one night the consultant phoned me for an initial telephone consultation.
She said that from what I’m hearing it sounded like we were dealing with autism and he needed an initial appointment, followed by a full assessment.
It was the summer, maybe June, when I had that conversation with William’s teacher (followed by 48 hours of denial episode). William had his assessments in December.
It was in intense 2 days. Usually, you have a gap of maybe a few weeks between assessments, but due to a cancellation, William’s were on consecutive days.
I didn’t think I was that stressed out by it all at the time, but my body said otherwise. I came out in a rash all over my face which looked like I had countered my skin with acid. With hindsight, I can see that it was in fact caused by the stress of the process.
The assessment
The first day of the assessment was called the Social Communication Clinic” and consisted of 2 parts. William went into a speech and language assessment, where, though play, a speech therapist assessed his speech, plus both his spoken and receptive language. They found that while his spoken language was good, much of it was “learned” or “scripted” rather than spontaneous.
While this went on, my husband and I were asked a series of very specific, very in-depth questions about every aspect of his life. These questions highlighted red flags in several areas of his life, such as social situations and ritualistic behaviours.
Assessment day 2
The next day William had his ADOS assessment which we were able to watch through one-way glass thing. The whole thing consisted of lots of mini “games” and scenarios, from dolls and imaginary play, to sequencing toys and more. One was a simple as having a toy car under a blanket. They listed the blanket and noted down his reaction.
I had all the criteria they were looking at and assessing for each little “test” in front of me and for the first time I saw how without me to compensate for him, he really was struggling.
The diagnosis
For some children where symptoms are quite obvious, they may be able to give you some sort of indication on the day if a diagnosis is necessary. This was the case with William. They confirmed that we were dealing with autism to some degree, and said that they would bring us back in for confirmation of the dress of autism.
The diagnosis: Moderate Autism
When William was actually diagnosed with moderate autism I was surprised. If I’m honest still I wasn’t sure if it had all been in my head or something that he would have grown out of. I was even more surprised that he was diagnosed with “moderate” as I was pretty are that if we had a diagnosis at all, he would have been diagnosed with “mild” autism.
That was all shortly before his 4th birthday
Fast forward 4 years and William really is thriving. Gone are most of the phobias, the scripted speech and most of the difficulties we faced back then. Although we have faced new challenges, I know that William would never be doing as well as he is now without the diagnosis and the things that we subsequently put in place.
Bella’s Story
I always thought does not have autism because she’s so different from her brother. She’s always been good with eye contact and seemed quite sociable on the face of it, so initially, I never suspected autism.
She began, however, to have increasing meltdowns, both in frequency and severity. She needed more and more ritual and routine and she’d get very anxious about things.
My husband said to me one day “I’m sure she has autism too” to which I replied, “Don’t be ridiculous, she’s nothing like Will”.
A little research, however, revealed that autism displays in a very different way in girls. They often mask symptoms, mimic asocial behaviours and are far harder to diagnose.
We decided to get her tested
Even though the school had zero concerns about her progress as she was, and still is, thriving and performing at or above her age level in all areas of the curriculum, everything I read suggested that this was pretty common in girls with ASD. So many displayed no really “obvious” symptoms the way boys would until they were much older. So often these teenage girls would end up unsupported and feeling depressed. I did not want this for Bella.
I also had the whole “age 5 cut off” thing hanging over my head. I really felt that if she needed any kind of help and we left it beyond age 5 then we would face huge struggles to get it.
Was it all in my head?
I didn’t know if I had concerns about Bella because I was surrounded by autism and seeing it everywhere, or if, because I knew so much about it, I was picking up on things that would normally be missed. Either way, I knew that getting her tested was the only way to know for sure.
The assessment
Now we are coming to the part in our story where we had Bella’s social communication clinic, the first day of assessments. This was the day that I did all of those Instagram stories and had all of your questions.
I answered the very in-depth questions in one room, while Bella had her speech and language assessment in the other.
Once both assessments were complete, Bella and her younger sister, who was also with me at the time, were taken to do colouring in the next room so that the doctor and speech therapist could feedback to me.
The consultant said that clearly we’ve got concerns about Bella with the kind of ritualistic behaviours, and although these things are not yet being seen in school, there was potentially enough evidence to move onto the second stage of the assessment, the ADOS assessment.
Then it was the turn of speech and language therapist to feedback her findings. “I know what you’re gonna say,” I said, “she’s very bright girls and you have no concerns”.
“Yes, she is very bright and there are a lot of positives here” she replied. ”Her spoken language is excellent equivalent to that of a 7-year-old, even though she’s only just 5”.
However…
“This is not all in your head, there are signs of autism here”
I burst out crying
I’m not sure exactly why I cried. Maybe it was shock? Maybe relief that it wasn’t all in my head? Maybe because really I believed that it was all in my head? Maybe I wanted to be proven wrong? Who knows.
I feel differently now
I now know, having had a few nights sleep on it, that William is doing amazingly well and Bella well too.
She is a wonderful little girl whether she has autism or does not have autism it does not change her at all. Both children are all very bright and loved and will thrive and have wonderful happy lives.
I genuinely believe that if a child needs a diagnosis then they are better off having one. I know some people don’t like to” stick labels on children”, but I don’t think about it like that.
I always like to have all the information.
If you have all the information you can give that child exactly the help they need to thrive in the best possible way.
I just have to see the positives. If she needs extra help she will benefit from that extra help
The next steps
I have just received the letter confirming the date for Bella’s ADOS assessment, it’s in 2 weeks time. They have already said that hers will be a little more complicated than William’s, as her spoken language is so advanced and they’ll have to use criteria designed for older children.
They have also confirmed that they will not be able to give me any indication of results on the day. While William’s test was quite easy to read, Bella’s results will be based on subtle clues that she demonstrates and will have to be carefully scored. We will receive no information until the follow-up appointment.
If we do come out with a diagnosis I would say it would be “mild autism”, but then again, that’s what I thought with William, so I guess you’ll have to watch this space.
Have you got concerns that your child may have autism?
Have you begun to explore diagnosis options? Where are you on your journey?
Let me know in the comments ??
Fancy Getting Your Hands On My Ultimate Mum Bundle Resource?
Why Not Pin This For Later?
