If you have a gut feeling that your child may be neurodivergent, it may not be as easy as you hope to get help and a diagnosis.
The signs can become noticeable at different ages and no two children's symptoms are exactly the same. Seemingly, the main source of information and support for many parents comes from support groups created by other parents of neurodivergent children, rather than medical professionals and schools.
This week, I spoke with five parents of neurodivergent children about their experiences.
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What were the first signs you noticed that made you think your child may be neurodiverse?
Michelle said: “First signs we noticed were around the age of two. The main one was lack of sleep.
"She either wouldn’t go to bed or would wake for hours through the night (she still very occasionally does this). She also either never used to make eye contact or would go the complete opposite and just stare at you with wide eyes and raised eyebrows, an almost startled expression.
"She also repeats phrases over and over. She still does this now, but we now know it’s what’s called 'echolalia'.”
Melissa said: “My son was picked up on from an early age as he was very repetitive. He would only eat certain food, he liked to line things up and he avoided all emotional contact.
"He wouldn’t hug us or show any emotions at all. He would hate noise but was the loudest child ever, banging and screaming.
"He was terrified of the washing machine and would wedge a massive plank of wood against the washing machine, to wedge the door shut. Some days we wouldn’t get to school until late as he used to count the steps from our house to school (561). If it was under or over we would walk back and forward until the number was correct."
Dionne said: “In Year 7 my daughter started coming home from school with headaches. She was exhausted and was having huge emotional meltdowns that would last for hours. She started refusing to go to school, and in one incident walked out of school but couldn’t tell me why, other than 'school is stressful'.
"Totally out of character, as she’d always loved school and is really academic. Her headaches continued, so I took her to the doctors.
"The school refusing got worse, but her bloods were fine, so I called Young Minds, completely at the end of my tether. They guided me to research autism.
"From that moment, everything made sense. She was a toddler who screamed when I left her at nursery or school.
"When we went to the supermarket I had to leave my trolley full of shopping on many occasions because of her outbursts. She always used to roll around the floor watching tv and throw herself at people full force, now I know was sensory seeking behaviour.
"As a teenager, I started to notice she would flick her hands out and started to carry lots of bits and bobs around in her pockets. Her AirPods go in when we’re around any noisy places and she can talk for hours about a subject she likes without picking up social queues for a two way conversation."
Stacey said: "I couldn’t pin point anything. It was more of a feeling and lots of small things.
"He never put anything in his mouth as a baby. He’d get super frustrated over seemingly small things and his communication didn’t develop as his peers.”
Lindsay said: “My son is five years old now but early on we noticed he wasn’t meeting developmental milestones such as crawling, walking and talking. Unfortunately, as for many children his age, we were heavily impacted by lockdown.
"Although I believed for a long time that he was autistic, it was difficult to tell how much of what he was experiencing was caused by social anxiety and being isolated from his peers for such a long period.”
What adaptations have you made to your daily life to make things easier for them and/or yourself?
Michelle said: “Strict routine. Absolute standard, as life would be hell without it.
"We used to use “vision boards” and “now and next” boards. But she has a better understanding now, so we can just tell her and remind her, rather than it needing to be visual.
"I had to leave work to become her full time carer. When she first started school, she didn’t settle well at all, lasting only two hours a day. We worked with her and built it up by 10 mins each week until we reached 3pm.”
Melissa said: “I made a routine. A rigid routine, and sticking to that helps our day run smoothly.
"Primary school was OK for him, as it was the same every day. Once he went to secondary - totally different story.”
Dionne said: “We have to plan everything and give her options in advance. For example, at the weekend we give her two options to choose from, for things to do together.
"We make sure that we give her a few days to mull it over. She doesn’t deal well with last minute plans. There are certain restaurants, shops and foods she can’t tolerate so we avoid those.”
Stacey said: “Constant commentary has been one of the biggest things. Always making sure that he’s aware of what’s happening, what’s happening next and what’s expected of him. And adjusting my expectations of him.”
Lindsay said: “As for all autistic people, routine is key for my son and our family. Deviating from that routine can cause unnecessary distress. Of course, there are times when we have to.
"But we do our best to ensure that we have coping mechanisms in place which help him deal with the change in routine. Using “now and next” boards and visual aids can help him understand the change.
"Using ear defenders to make him feel secure, and ensuring we bring his favourite toy or snack which gives him a sense of familiarity. My son is sensory avoidant and struggles to cope with loud noises and crowds of people so we generally avoid places we know will be busy and loud.
"We are now 15 months post-diagnosis and although he has always been autistic, we now have a better understanding of his triggers. This enables us to manage situations better and to pre-empt when he is becoming overwhelmed.”
Do you have any tips on helping them deal with their big feelings and emotions?
Michelle said: “Drawing. My daughter can struggle to express her emotions to us. Or even understand why she is feeling what she is feeling. So I ask her to draw it.
"Usually she will draw what it is that’s made her feel the way she’s feeling, rather than drawing the emotion. Then we can talk about it.
"Explain different outcomes and solutions and settle her mind, as she can be a worrier. She’s an absolute rule follower, so the slightest thing like her teacher having to tell her to concentrate can send her into a panic.
"She’s very fearful of getting told off. In school, they also have emotion jars for all the children.
"They have a painted stone each, that they can put in a jar that best represents how they are feeling that day. They can move it throughout the day, and the teacher can sit and talk with them if they put theirs in the worried or sad jars."
Dionne said: “She takes herself off to a quiet place, if she needs to. And we just leave her until she’s ready to talk.
"The biggest change is being calm and not trying to figure out what’s wrong. She usually opens up if we drive in the car or do some crafts, so we wait until she calms down and do something together.
"She also has lots of weighted blankets and soft toys (which she hides when her mates come round). Little things she needs to soothe herself when she’s had a tough day.
"My biggest advice for dealing with emotions is to give them space, support them to self regulate/soothe by knowing what works for them. Don’t offer solutions.
"Ask for permission to talk about it and permission to cuddle them before rushing in. Just listening also makes a big big difference.”
Stacey said: “Labelling emotions and letting him know that his emotions are valid. Even when his actions aren’t.
"We also use modelling behaviour. If I get angry or shout, then I apologise and explain that I was frustrated, but it still wasn’t OK for me to do that.
"I want him to know that it’s OK to have emotions, and sometimes our actions aren’t acceptable and we have to own up and apologise when that happens.”
Lindsay said: “My son has significant communication difficulties and visual aids help him understand the world around him. His understanding is limited, so emotions are a tricky concept for him.
"We just try to ensure we create a secure environment for him, where he is able to express those feelings and emotions in a safe way.”
Do you have any tips for advocating for your child and pursuing a diagnosis?
Michelle said: “Do not ever give up. Trust your gut. You’re their parent, you know best.
"You will have a fight on your hands, you will feel like banging your head on a wall and you will question yourself, but do not give up. Go along to SEN groups.
"They are mainly run by parents who have been through it all, before you. The tips and advice you can gain from these groups are invaluable.”
Dionne said: “It’s been a very long and tough process, getting her diagnosed. I have had to bang every GP, CAMHS and school door down.
"Sadly this is the case for every other parent I’ve spoken to with a neurodiverse child. It’s a constant uphill battle to get them support and even a diagnosis doesn’t mean support.
"I pay privately for her to have a counsellor she can talk to about anything, just to encourage her to know that it’s OK to talk.
"Her diagnosis was a big deal for her “mum I’m not weird after all” was the first thing she said. Which was heartbreaking for me, but means she now cows understands and can explain what she needs to handle things.”
Stacey said: “100% trust your own instincts. We often feel before others see.
"Educate yourself on the processes, and what your and your child’s rights are, during this time. It will make you feel more confident when faced with professionals who are perhaps not seeing eye to eye with you.
"And document everything you can. If the school point something out, ask them for it on wiring or a report.”
Lindsay said: “Having spoken to lots of parents of neurodivergent children, I know some feel unsure about pursuing a diagnosis as they don’t want their child ‘labelled’. I can’t emphasise enough how important a diagnosis is, both from getting the support your child needs to navigate their way through life but also in helping them understand who they are.
"Educate yourself. Talk to other parents of neurodivergent children, join communities on social media, read books, watch webinars. There are a whole host of resources out there for parents, children, siblings and families of neurodivergent children which will help you navigate your way through.
"I think the most important thing in this whole journey is to celebrate your child. Celebrate every milestone, no matter how small they seem, as in our world they are huge.”
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