Starting with the early concerns and questioning “Is my child Autistic?” to fighting for a diagnosis and finally getting the right support – we asked one of our clients to share her journey of parenting twin neurodivergent children. For anonymity, we will refer to the children as ‘M’ and ‘E’.
Over the past 20 years, ISLTS has helped many children and families living with autism and other neurodevelopmental disorders. At whatever stage in the journey the family comes to us, our aim is to get the right diagnosis and create a safe environment for positive development.
We hope this story will offer you some support, guidance and perhaps a little light at the end of the tunnel.
When did you first ask yourself is my child autistic?
As a first time mum to twins, I couldn’t help but compare them to each other, particularly around the milestones.
M’s Story
12 months
I noticed that our son ‘M’ was not babbling, crawling or responding to his name. Whereas his sister ‘E’ was. I initially thought he might have a hearing impairment and took him to the GP who referred M for some simple hearing tests. These came back as ‘normal’ and I was told that he should eventually speak. After a few months of no improvement, we began the journey of endless referrals to investigate why.
18 months
Whilst we were waiting for a medical explanation, I disappeared down the Google rabbit hole. M was also very unsettled when it came to sleeping and suffered a lot with night terrors. After searching for speech delays and poor sleep, the word ‘Autism’ popped up. This was something I knew very little about but I recognised various characteristics that M was exhibiting.
I continued to monitor M’s reactions to things when we visited indoor play areas, birthday parties, interacting with other children and playing at communal parks. I noticed that he would be oblivious to others and play alongside them in his own world. This is when I really started to question – is my child autistic?
3 years
As he got a bit older, these responses changed and became more vocal, distressed and quite often we would have to leave places in a hurry. He still could not verbalise to us what it was that had upset him. This reaffirmed that he struggled in social settings.
E’s Story
With our daughter, we were so much later in recognising her ASD (Autism Spectrum Disorder) traits as her brother had displayed his in a much more obvious way.
Early years
E has always been a very shy and timid child. Over the years, we noticed that she didn’t enjoy birthday parties and would stay very close to me. I assumed it was because her brother had not enjoyed them and it was a learned behaviour.
Primary school
E was very keen not to get into trouble and the thought would make her very upset. On one occasion in Primary School KS1, she turned around with her lunch tray and knocked into someone else by accident, spilling their lunch. She became so distressed at the thought of getting into trouble, she was unable to breathe properly. The teachers quickly gave her some puffs of her asthma meds.
During her school year 5, when we were in lockdown, her anxiety was very high and she became very frightened and tearful. I noticed that she struggled a bit with her learning during homeschooling, which surprised me as she has always been so capable.
It was hard to finally get her to go back to school when it reopened, and she would become more openly upset in front of people and started to refuse to go into school. She has always had a small social circle of studious, quiet girls who she felt safe with but she didn’t seem to know the reason why she didn’t want to go to school. Her anxiety became more physical and she started experiencing wobbles. She’d feel the floor tilting and moving, fearing she would faint. I regularly got called to collect her.
What types of behaviours were they exhibiting/not exhibiting that led you to seek a diagnosis?
M’s delayed speech was the most significant sign along with terrible sleep and not enjoying large groups with lots of people/noise.
M also didn’t crawl and instead he would roll across the room to move himself. Eventually, after he learned to walk at 15 months, he did crawl in his own way, and he would put his head on the carpet and push his body along so that his head would almost hoover the carpet. I now understand that he loved the sensory feedback of that sensation. At the time we all thought it was quirky and were just so happy that he got himself on the move in his own, unique way.
E was incredibly shy, timid and suffered terrible anxiety at the thought of school. She also didn’t enjoy parties, loud noises and darkness. The cinema is a place of fear for E and makes her feel so overwhelmed she went once and ran out crying – she never wants to go back again.
She is also very clumsy and has had some nasty falls in school, one time breaking her nose.
E is also funny about certain food textures, is a picky eater and will not try any new foods. At the time, I assumed that it was just her being a fussy child.
Did you try the NHS route first? What motivated you to get a private diagnosis?
M’s Story
Since M was two years old we had been on an NHS waiting list in our home town prior to relocating to Norfolk. M was then passed to the Children’s Community Hospital where we saw a doctor every 6 months who just kept saying it was too early to tell. M was still not talking and we could not access any speech and language therapy on the NHS.
When M was due to start preschool at 3.5 years, the Pre School Manager agreed with my concerns and supported an Education, Health and Care Plan (EHCP) application prior to him starting school. It was the first I had ever heard of this.
She was brilliant and advised that if we could afford to, to get him some private therapy. Suggesting that the NHS wait would be too long and the sooner we had intervention the better. She recommended ISLTS and we did not hesitate in making contact.
Disappointing diagnosis
We finally got an NHS autism diagnosis when M was 6 years old. Having been back and forth for years, the actual diagnosis was very hurried and rushed with one quick ADOS (Autism Diagnostic Observation Schedule) assessment. The diagnosis was given to us in a five minute appointment with a doctor that we had never met and who had never met our son. The appointment letter had specifically asked us not to bring M.
We felt disappointed and at a loss as to where to go next. It was such a long winded four years to then be given a rushed, one size fits all ASD diagnosis.
Since then, we have paid for a private autism assessment which involved a DISCO (Diagnostic Interview for Social and Communication Disorders) and M has gone on to be diagnosed with Dyspraxia, severe Dyslexia, Mears Irlens Syndrome & ADHD. Had this all been screened for in the beginning, we would have had a much more honest and clear picture from the start. Most importantly, M would not have had such a difficult few years at pre-school and primary school.
E’s Story
For the second time, we were asking “is my child autistic” – we couldn’t really believe it but needed answers. We decided not to even bother going down the NHS list for a couple of reasons:
- The NHS journey to get M a diagnosis was so long, disjointed and confusing.
- Waiting lists had increased significantly from 4 to 7 years.
- E had already missed vital years of additional educational support. This had impacted her learning development, friendships and importantly being able to understand herself.
High School was a turning point and we wanted to get E the support she needed to manage the next stage in her education. Luckily we had some savings, so went back to ISLTS for a private autism assessment.
I trusted the team at ISLTS completely as they’d taken such good care of my son. I knew I could rely on them to not only deliver an excellent service but to understand the urgency I felt, regarding E getting the right diagnosis.
Stress free, prompt and reliable
Again the ISLTS experience was incredibly supportive and very different to our NHS experience. Thankfully, E was diagnosed very quickly with ASD (Autism Spectrum Disorder), as we had expected. This formal diagnosis helped us start a relationship with the new school SENCO as well as the Pastoral team.
As a result, E has access to small intervention groups for learning. She can also leave classes earlier to start the transition to the next class avoiding the chaos of the school corridors. Some days E is late, this is due to her being emotionally dis-regulated at the beginning of the day. The pastoral team understand this and have assured us that they would never raise a concern about lateness or attendance.
E does not have an EHCP (Education Health Care Plan), but these small amendments have made a big difference to her high school experience. I believe that having the diagnosis has helped immensely with everyone being made aware of her autism needs.
How would you alleviate other parents’ fears about the process involved in obtaining an autism diagnosis?
As soon as you ask yourself the question “Is my child autistic” there’s no turning back. In your heart, despite pursuing a diagnosis, you want to believe that you have got it all completely wrong. That you have been worrying over nothing and that they will grow out of it.
However, in your head, you know that if they are going to have a chance at being given the same chances and opportunities in life as their peers then they absolutely need this diagnosis. It’s necessary for you to get the correct support and education as well as being understood and accepted.
There is a very strong, mixed emotion when you do finally receive a diagnosis for your child. You want to hit the person telling you but at the same time, hold on to them and cry with relief as you finally have the confirmation that you haven’t made it all up.
It’s the best thing for everyone in the family to know and then you can start to understand, accept and learn the world of Neurodiversity.
What difference has getting a diagnosis meant to you, your children and your wider family?
Personally, parenting two children with a variety of Neurodevelopmental disorders has made me a better, more empathetic, less judgy human. Understanding how someone’s brain works differently, what triggers them and how to help them regulate has improved my own skills as to how I interact with people. I am more aware of my brain and how I have reacted or dealt with certain situations over the course of my life. It has taught me to be kinder, more patient and more tolerant.
My children are so emotionally intelligent and perceptive to people’s moods and emotions and this can make them incredibly caring. Equally it can make them very heightened if they sense danger. I am so glad that they know this about themselves and can now live their best, true lives.
The autism diagnosis has helped us to get our son a place in a specialist school setting. Our daughter manages mainstream high school but now gets additional support. She has a quiet, safe place to access if she can’t manage a particular lesson. Plus, some tweaks have been made to more complex lessons which have actually benefitted all the children in the class.
What advice would you give a family who might be at the very start of this journey?
Try not to spend too much time on feeling sad about having to venture down this path. Think about the outcome and what you are doing for your child.
You are helping them enormously by pursuing their truth and they will be lucky to learn this about themselves. You will be connected to a new group of people who will understand and welcome you all. It is so special and comforting to find other families and professionals who just get it.
By pursuing a private diagnosis, you are taking control and avoiding the additional and unnecessary distress that comes with the severe delays that this service has experienced for years in the NHS.
Early intervention is key
Unfortunately, for children like ours, that early intervention does not exist in the NHS or even in most schools. Parents have no choice but to lead the way and seek the information themselves. I truly believe that had I not been signposted to ISLTS by someone who did care and did acknowledge my concerns, then my son would likely be non verbal today.
With time, care and encouragement from the team at ISLTS, M got there. It is a joy everyday when he talks ‘at’ me about all of his obsessions. I am now an expert on Disney cartoons and animation concepts.
Equally, for our daughter, having the diagnosis just before starting high school has been helpful. It provided an extra ring of defence both mentally and emotionally just knowing that there are people who understand when she struggles. She will also get additional time for exams in the future which she will benefit from greatly due to her executive functioning being a bit slower than some.
Had we waited for the NHS, it is likely she would remain undiagnosed for the duration of high school. This would have made the entire experience a lot harder for everyone and severely affected her learning and subsequent future options.
How would you describe the service you’ve received from the team at ISLTS?
A really amazing, supportive, caring and kind bunch of humans who just make everything about this journey so much easier and manageable. In my opinion, they are simply the best!
Get the Right Support
If you have concerns and asking yourself the question – is my child autistic, we are here to help.
Before we agree to undertake a full autism assessment, we invite individuals/parents/carers to complete a questionnaire providing information about their concerns as well as some background information.
If after taking our FREE initial questionnaire we feel there’s enough evidence to warrant a full autism assessment, you will be invited for a further discussion.
With the right support, interventions and awareness, we hope for a brighter future for everyone living with autism.
Further Support & Reading
Blogs on Autism – Our blogs section is full of useful advice and information.
