What’s your name and where are you from?
Julie, Northants UK
What’s your connection to autism?
My daughter was diagnosed ASD aged 3
And how old is your daughter now?
She is 8 years old now
Can you tell me the type of things your daughter struggles with due to having autism?
When younger she had regressed and lost speech. Speech returned around age 4. She really struggles with writing as her fine motor skills are poor but she never stops trying. She has social anxiety and finds busy places stressful. Her lack of danger awareness is a huge concern.
I can imagine it must have been a really worrying time when she regressed, how did you deal with seeing the regression right before your eyes?
It was heart breaking. It felt like someone had flipped a switch and turned her words off. We had a very frustrated and angry child that wanted to communicate so badly but couldn’t. So we learnt Makaton signing and PECS (picture exchange communication system) and it opened up her communication in other ways.
You sound like you were very dedicated to her needs. It can’t have been easy learning a whole new way of communication and then teaching it to a child. You mentioned your daughter lacks danger awareness, can you tell me something she might do that a child her age perhaps wouldn’t?
She would not hesitate to turn the hot tap on and put her hand underneath. She would not think about cars on roads although her road safety awareness is improving as we practice that a lot. Sitting in windows used to be an issue and climbing out of them regardless of floor level.
Do you get any help from outside services that benefit your daughter, like speech therapy?
Speech therapy is done at school although she’s not seen often as she doesn’t need much these days. We were under the continence team last year who helped Eliza become fully continent aged 7 with encouragement, ideas and support. School do art therapy and music therapy. One of the best services we paid for ourselves was weekly Equine therapy. Really helped her anxiety and social skills as well as she was a natural rider.
She sounds like she is progressing really well and I am sure it has taken many, many years of very hard work from yourself and the therapies she has had. Can you tell me a little bit about what Equine therapy is?
Eliza attended Saturday club there every week for just under a year. Each week they’d learn about the horses and there was lots of role play (like pretending to call the vet and describe an injury. Find out the treatment etc.). They’d be shown how to groom the ponies whilst learning names of body parts and equipment. Some weeks was painting horses. Very sensory. Like special chalks to actually draw on the ponies (non harmful) then they’d get to brush and wash it off. Riding always changed her. She’s got naturally good riding balance and refused a saddle so her riding was bareback and her arms out like an aeroplane. She got to socialise with other children and learn responsibility whilst having fun.
That sounds amazing, and what’s even better is that Eliza has benefitted so positively from it! Can I ask, what was your reaction when she was first diagnosed with autism?
Relief. I was already certain she was autistic, as was the speech therapist and GP at that point but we needed it officially on paper so she could access as much early intervention and therapies as possible.
How did you find the whole diagnosis process?
It was relatively straight forward once we got rid of the paediatrician that wrote her off at age 2 saying she’d pretty much amount to nothing!! Assessments started around September 2012 and we had diagnosis by December the same year. We were lucky to find an amazing nursery who made the whole process so much easier and a brilliant IDS (Integrated Disability Services) keyworker who chased up reports and assessments promptly and even put me on an autism parent course to increase my knowledge and seek support
Post diagnosis, you are pretty much left to your own devices though so I made sure we went to local support groups and made my own network of friends and eventually opened up a Facebook page in the hope others wouldn’t feel as lost as we did at times.
I am so glad you had such a straight forward diagnosis process, as we all know for many it has taken years of battling just to be heard, what advice would you give parents who are struggling to have their child assessed?
Keep pushing GP’s, paediatricians, Health Visitors, Nurseries and whoever will listen to you. You know your own child so don’t be fobbed off. Gather as much evidence as possible if you can – video your child so you can show paediatricians etc what they are like at home (Obv as long as the child is safe and you can do this). Keep an event diary that highlights possible triggers for certain behaviour or meltdowns, get online and access as many support groups as possible because often there are not enough in your own area if any at all. Keep fighting and try not to feel alone and lost.
Can I ask does Eliza have an EHCP?
She does. When she was 3 she was issued a statement of educational needs which has now been transferred to EHCP as of last year.
I remember the statements! How has an Educational, Health Care Plan (EHCP) helped Eliza as opposed to not having one?
It is an important document that contains all info surrounding her educational needs. It describes the provision she needs to enable her to achieve her full academic potential whilst maintaining a safe environment, adequate support and acknowledges anything that might impact upon that such as her anxiety.
Whatever is stated in the EHCP offers guidance to all staff working with Eliza. They will be aware of both strengths and weaknesses and advised on how she learns best, what support she needs etc.
It sounds like a vital document to have in order for Eliza to progress to her fullest.
Are you a full time carer for Eliza? Have you had to sacrifice anything to make sure you can be there for her more than you might with a neuro typical child?
I am her registered carer. I gave up my career as a nurse to be at home with her after her regression. I needed the time to learn PECS, Makaton, do the parenting courses, take her to toddler groups and settle her in nursery etc. I also needed to be with her all the time because of being non-verbal for a few years until her speech came back, because of the lack of danger awareness. It wasn’t easy to find suitable childcare for her that could accommodate her needs anyway. I’ve sacrificed a lot of sleep!! Her sleep pattern can be awful especially in school holidays when she loses routine.
As parents we would do anything for our children, but how did it make you feel having to give up work?
I was lucky that my husband earned enough at the time to support us all so I could give up work. It was not an easy decision to make, I’d only been qualified 5 years so that was tough. I don’t regret it one bit though, how she progressed was worth it.
You have been a huge reason in why Eliza has progressed so much. When people talk about autism, we hear a lot about the word stim. Does Eliza stim? What stims does she display?
Eliza stims. She gets very ‘flappy when happy’ so lots of arm flapping. Sometimes if sitting on the floor she’ll lift both legs straight in front of her and flap them up and down really fast. She hums a noise, “eeeeeeeeeeee” is a popular one.
How does stimming help Eliza?
It shows me when she is happy a lot of the time. For her it is a way of regulating emotion and/or senses. By stimming she can focus on what she is doing better which sounds odd as she is making a lot of noise by humming and flapping but that’s how it works
#Prostim! People with autism are known to have meltdowns. Meltdowns are often confused as tantrums to those who don’t know much about autism. Meltdowns, in fact are extremely different from a tantrum, and are often caused by sensory overload, anxiety etc. As you know Julie, meltdowns can happen anytime, anywhere, often outside in public, this can cause a lot of unwanted attention from passers-by, what advice would you give to parents, who have children that meltdown outside and are worried about what the general public are saying about them?
Focus on your child and theirs and your safety. Try not to concern yourself with the public, a lot of them won’t understand sadly. If anyone is offering help and it will genuinely help, then take it. If anyone is not helpful and being rude then politely but firmly ask them to move away.
Good advice. Now last but not least, you have a Facebook page, can you tell me what it’s called and what it is about?
It is called ‘Living with Blooming Autism’ and I started it in the hope of creating a place for me to raise autism awareness, acceptance and understanding but also to network with other pages that I can learn from and if I made new friends that was a bonus. I try and keep the page as positive as possible because there is a lot of negativity about autism all over social media and in the news. I try and keep it real and honest but remain aware of Eliza’s right to privacy and dignity. I wanted people to see that despite what ‘professionals’ say about children, they are not always right. Nobody can predict the future. Nobody can say a child will never do something because they just don’t know.
Thank you so much for answering the questions! For those of you who haven’t visited Julie’s page please head over to https://www.facebook.com/LivingWithBloomingAutism/ and follow her wonderful journey about life as a parent of a child with autism.