OUR AUTISM STORY | ASD DIAGNOSIS JOURNEY UK | AUTISM EARLY SIGNS AND SYMPTOMS | MUMMY OF FOUR
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- Опубликовано: 18 янв 2020
- In today's video, I am sharing our family's autism story. We have one child who has been the whole diagnosis process and another currently going through it. I am sharing early autism signs and symptoms that started us on our ASD journey. If you have any questions about autism that I do not cover in this video, please comment below and I shall try to answer in future videos and blog posts.
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Hi! I’m Rhi, Mummy of Four, & I help busy Mums make their lives easier with parenting tips, tricks, hacks, reviews and advice.
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I'm now starting the process for my sons assessment. I found it comforting that the Maori culture have a word for autism - translates it means ' one who is in their own time and space' makes a lot of sense!
Yes! Takiwatanga ! Not sure if I spelled it correctly. Having spent a week of my summer as a middle schooler in New Zealand , I got to spend a few days with a wonderful group of Māori friends. I loved every second of my time there and wished I didn’t have to leave!
Hi just found your vlog and can I just say I am you right now. What you went through and how you expressed it! I am so thankful that I found your vlog! I felt so validated for pushing and advocating for my children. I have three kids. I am going through testing and all the stuff with my oldest girl now. When you were describing your daughter and all the things you were feeling .My son was the first to be diagnosed. I have a feeling all three of my children are on the spectrum but the signs were missed for so long on my girls. Thank you! Thank you!
I'm so glad it helped x
Thanks for the video. I’m seeing concerns in my daughter emotionally even though she’s incredibly smart emotionally she struggles. We are just starting the process. Thank you for sharing your experiences x
Lovely for you to talk about this my youngest daughter who is 14 has autism adhd and is selective mute, we have been homeschooling her now for the last 4 yrs x
I’m glad you liked the video x
Half way through this video, It’s crazy you’re describing my son. Apart from the being bright lol he is developmentally behind by about 2.5 years. We are just about to start the assessment for autism. He had a lot of other issues when younger he is now 5 with an ehcp in a special school and thriving but I do struggle at home. We need to sort some routines in place. As I am very much go with the flow so he struggles. I think currently I am feeling a bit overwhelmed as finally being listened too but also know a lot needs to change at home. Also had people around us, I think basically think I’m making things up. Or excusing “bad” behaviour. There is so much information out there and it’s so overwhelming google led me to your channel and I will now binge watch. Thank you for being real, putting yourself out there. This journey after I feel like I’ve been on such a journey already with an 8 year infertility battle and ivf, is so head blowing. It’s like we now need to learn from scratch x
I'm so glad the video helped in some way. Be kind to yourself, it's a lot to take in. When you are ready, I have lots more resources on my blog - mummyoffour.com/category/autism/
The strange thing is that I can see that my daughter had so much in common with Bella. I thought it was just little foibles that she'd grow out of and consequently didnt have her tested for anything. She was a gifted child (14GCSE and 4A* A'Levels)
Melissa is 27 now. She lives in London after completing a 1st class degree in music arts The Royal College of Music and getting a 1st in her Masters at the Royal Acadamy of Music. She works in the London Symphony Orchestra among others too. But she still exhibits austic behaviour from time to time.
Never blame yourself Rhi...you just do the best you can. Mel is my only child and I adore her.
Things WILL work out the way they are meant to. You are doing a great job xx
Wow Rhi, that was quite emotional, thank you for sharing your journey with us ❤️
Thank you for watching and supporting my channel 🥰
Thanks for the video. We are at very early stages with our 18month old son but he is displaying strong signs of non verbal autism. It's scary how the 'pathway' to a diagnosis differs from even County to County let alone Country! From what I can gather it can be a long and hard fought battle to get your child assessed. I understand as parents that we aren't professionals but we know when something isn't quite right with our children. Much love xx
Exactly! We may not be qualified, so all we can do is trust our gut and get things checked when something feels like it needs further investigation. I hope things go well with your son x
I can relate so much to this video my 6 year old son was diagnosed with autism when he was 2 and a half . He is also doing very well at the moment but he has a very restrictive diet too which as mother who wants to see her child eat well can be heartbreaking.. He has no meals only marmite sandwiches walkers ready salted crisps and aldis squeezy yoghurt.... That's on repeat through the day.. He is also still in nappies..we are hoping to really try and. Get him out of them this year....but it's not easy!!
Now I have a 20 month old boy who I also think is showing signs so we are thankfully already in the system which hopefully will get us quicker to a diagnosis if need be.
Love the honesty in these videos its very much appreciated and admired xxxx
I hope you get some answers soon about your son. I'm so glad you liked the video, thanks for watching xx
Your children have the best mum..💖didn't know any of this as I'm only a newbie for 6 months or less.but i love your channel.could go further back...... forward following...... watching your family is your future now 👍xx
Thank you so much for your kind words x
Such an interesting video. I've gone through the diagnosis process twice. My youngest was diagnosed at 5. It took us from age 6 to age 13 to get my oldest child diagnosed. I can relate to so much of what you have said in this video. I fully agree with you if any concerns try and get it looked at under 5 via the health route. It is so much harder after 5 through schools.
I have been fighting to get my grandson assessed here in Shropshire since he was 2yrs, told he's too social to be autistic by paediatric consultant! School don't see his behaviours as he masks his symptoms and has done since Nursery! Had to go through the referral to Cauldwells children's Centre process 12 months in still fighting to get the Assessments, he will get them but because it's through their charitable referral the wait is horrendous. H is now in Yr 1 and has complex issues. So frustrated and angry, socially phobic, selective mutism and separation anxiety, also MLD and school now realising he needs Special school but just now fighting to get an EHCP! daily or hourly meltdowns at home and hates school. I Just feel totally exhausted, frustrated and let down by the whole process. H is frightened of everything in his life and he is being completely let down by professionals.
Thank you for sharing your children’s stories, I know how hard it is, but it will be fine, quite challenging I’m not going to lie, but fun along the way, enjoy them while there small, it certainly gets easier along the way, mainly because you’ll understand there needs better..
My son is 32 with severe autism & fragile x, to me he’s just my lovely son, others people can be shocked with his different behaviour & ways, but I’m just interested in him being happy & meeting all his needs, he’s certainly learnt me to be extremely patient & a master at problem solving, but sometimes I get it completely wrong so we just move on.. he’s worked since he left school & loves it, he now eats everything apart from lettuce, & he’s more accepting of his routine being broken, which I randomly do, so he’s not so distressed when things happen along the way, most of all we have fun, take care of you & hubby you deserve treats or just to escape, helps you focus more, when it all falls apart, you’re doing amazing xx
Oh thank you lovely x
Thank you so so so much for posting this!
I’m glad you liked it xx
Thank you Rhi, I’ve only just started to sit down and listed to all of your Autism videos, they are so helpful! My little boy is ASS and GDD and after listening to your stories about Bella it is making me think my daughter Bella may need to be assessed. Thank you xx
So glad the videos have helped x
I have two boys who have autism and were currently nearing the end of our diagnosis journey with my 7 yr old daughter. Diagnosing her was a whole lot harder then my boys as girls don’t always have the speech difficulty’s that boys have, she also never showed the behaviour outside our home. She has just had a cognitive assessment and it just needs confirming now. It’s a very long process since I have had concerns since she was 2. Good luck with your process not being too difficult x
This is what I've heard, girls are harder to diagnose than boys x
As a reception teacher I found this very interesting hearing from the parents perspective. Bella and William are very lucky to have such caring parents who are and clearly always will be striving for them to reach their full potential. Good luck with the next assessment Rhi and hope you get some answers one way or the other Xx
Thanks lovely 😊 and I’m glad it was helpful x
Really enjoyed this video. I had a son with autism diagnosed at 31 months old in 2010 and thought it couldn’t happen again.. 2020 about to have my nearly four year old diagnosed but they are different ends of the spectrum. Battling though the reality of more than one child with special needs good to know it’s not only me
I’m so glad you enjoyed it x
You're children, no matter what, are going to grow up and be amazing adults. Who knows, they could even change the world. I, myself, am blind and my Mum has said very similar things about how she got my diagonsis. Hugs from another UK human who's dreaming of sunshine and vaxines!
Thanks lovely! Here's to sunshine and vaccines ☀️💉
@@MummyofFourUK is it also worth checking if ur son has food alurgies just in case his rigid eating is caused by something?
This is a long and hard process I can relate to it. You re an amazing mum and you have special children. Hope by now you have found local groups /clubs/community for your children to make like minded friends but specially for you to meet other parents and share experiences. Home education is very good for children in the spectrum
Just to note that of your lifestyle isn't set up for home school.getting out and being able to motivate child to learn then don't do it. I did until mine was 9.
Thanks for sharing your story, my 13 yr old had just had his ADOS results which points highly that he’s on the spectrum, ( he’s also ADHD and has sensory issues ) didn’t have a diagnosis on the day as he’s complex !
I’m currently trying to speak to his consultant with no luck !!
He’s homeschooled atm due to not being able to cope with mainstream school which unfortunately not going very well 😢 I’m having to apply for an EHCP by myself so I can try and get him into an alternative school,
I’m lost in what to do, all I want is for him to be happy and he isn’t.
Thanks again, would love more videos on this you seem very informed x
I will put together some more videos. In the mean time, take a look at autism content on the blog that may help - mummyoffour.com/category/autism/
We r in cornwall and just got my daughters formal ASD diagnosis. Been fighting since she was 3, shes just turned 11. Now have full EHCP in place with 121 in school and SEN school for secondary. My eldest son also is on the spectrum diagnosed at 10 with DPD hes 19 now. Totally agree my son and daughter have totally different aspects of autism, each of them need very different routines etc xx
Gosh, 3 until 11 - what a battle! You poor thing x
Hi Rhi, thank you so much for sharing. Would it be possible for you to share any strategies, speech and language tips and any other useful tips that helped William with his speech, social interaction and anything else since he was diagnosed to now. He is doing amazing and he is the most sweetest little boy. Bella is such a clever girl and she will be absolutely fine as she has all the support and love she needs from the most amazing parents xxx
I have some resources where I have shared some strategies here - mummyoffour.com/category/autism/ take a look! I hope it helps, I’ll be happy to create some more content on the subject too x
A bit off subject but i mist say, those bangs really work for you lol u are so gorgeous! Love the video too btw. Please post moreeee
Thank you so much!!
Aw x what a day for you xx
yep xx
Hi I have 2 daughters on who's 17 who was diagnosed with Autism at 15 with learning disabilities also. She was wrongly diagnosed with ADHD at the age of 8. It's been such a long process & a fight ( appealing) for an EHCP. Which we was successfully accepted a little to late because like yourself I wouldn't back down & pushed by constantly "banging on doors" so to speak. Our youngest daughter who's 6 was diagnosed with autism last year. We experience her autism much more mildly. It's natural to us parents on the spectrum we know know different it's rituals & routine's day in day out so normal" for us. And when you come across other people who are going through the same or similar traits it's comforting & reassuring to know your not the only ones as most parents feel.
Thank you for sharing xx
And thank you for sharing your experience too 🥰
Thank you this has been very helpful. My eldest daughter sounds so much like bella although her speech isn't great, I've spoken to the school and she is being referred for speech therapy and her teaxher has picked up on little quirks. I'm going to ring our doctor, I dread it though bcos they always act like I wasting there time x
Don’t be put off - their job is just to refer you. Insist upon the referral, be strong, you can do it xx
As a woman who got diagnosed with ASD when I was 28, I can tell you that getting a diagnosis early is very important if you don't want to pay an arm and a leg to go private. I was very lucky to have a father who was willing to help me out with getting a diagnosis. It has helped me to get work which would not have been possible otherwise.
my boys have autism and on different ends of the spectrum they are like chalk and cheese my youngest i voiced concerns at age 1 he is almost 8 now and non verbal x my daughter is 5 almost 6 and since lockdown began i have seen a true change that makes me question and when school is back i will be starting process for assessment x its very hard to hear from professionals that your child has autism i cried as well x
Know all you are talking about.My son has autism,his is more severe..he plays music and loves books..he went through school..now he is in a day hab..he is 28 now.hes a routine kid to..and we had hard times with food..he wont eat hard foods..just soft..I can see your a good mom..hugs to u
Thanks my lovely x
Very informative video. Just wondering when your little boy spoke? Not just simple phrases but following a conversation? Thank you
My son has autism he has Aspergers he got diagnosed at 14 life is challenging it’s nice to know I’m not the only one x
You are definitely not alone x
Do you mind if I ask did the school or doctor refer you? X
E-star Turner the school referred him as they noticed the signs
Rachel de Haan thanku x
It was done because they wanted him to get help before his GCSEs so he’d do well
The hardest part is accepting it and admitting it to yourself as a mother. I buried my head in the sand wen family and friends brought it up that it was obvious my children had autism. I didn't want to believe it and was in denial for months before doing anything about it.
Please take time and apologize to those family members. I am that family member-
They just want the best for you and early Intervention. It is very hard!
@@MsPrice-pn2py I knew they were right but i thought it wasnt their child so it was easy for them to say something that wasnt going to have a massive or profound impact on their life as it wasnt their children. It was my life that was going to change forever. I thought that as soon as i have blew the whistle and voiced my concerns and doctors confirmed them, then i was going to be devastated. I think the parent comes to terms with it wenever they feel ready.
Awww Rhi 💗💙 thank you so much for sharing your journey your honestly an inspiration , keep us posted on Bella 💗 I’m currently going through a battle with my daughter she’s got hemiplegia and I’ve got a team in London trying to work out the cause and another team in Kent they don’t like to communicate I can honestly relate to you on the annoying the Drs haha ! I literally rung the neurologists receptionist for 3 days and they rung me back ...aha xxx
Well done for staying persistent x
Great video, thanks.
Glad you liked it!
Thank you for sharing this I have 3 boys aged 6 8 & 9 my oldest 2 have autism & adhd I have concern about my youngest but school doesn’t so I’ve let it go but now I think I will push to find out for sure
Thankyou for sharing...lots of food for thought. Xxx
I’m glad you liked it, thanks for watching x
Bella sounds just like my oldest daughter x
Dies she have a diagnosis?
my son is 15 now and we still get some people saying will he grow out of it ! there is not enough said about Autism and ADHD also Sensory issues x
My grandson was diagnosed in less than a year, his diabetic consultant noticed his behaviour and asked if he had ever been assessed, he hadn't but we all noticed he was different to other kids so he put him forward for assessment. The SALT lady visited him at home and she wasn't there long before she said she knew straightaway he had autism. Anyway long story short, he has high functioning autism, Asperger's (officially the term aspergers isn't used anymore but essentially that's what he has), he is extremely bright, he was reading around 3 year old and he can spell out loud. He has many other traits, he hates parties, he can't deal with crowds, he stims and has meltdowns, so Disney land would be a no no. He won't eat cold food, food with sauces, food what in his opinion the wrong shape, I could write a book on his traits.
Oh bless him. It’s funny, Will had so many traits and most of them have changed now from when he was little x
my son is ASC diagnosed he was diagnosed in march 2019
My now 8 year old is thriving so much with the right support, I'm sure your son will be the same xx
Mummy of Four UK aww that’s brilliant ❤️ I’m hopeful that he will :) xxx
Thanks for the video
Thank you so much for posting this. it has helped me so much with what to expect as my 2 year old has just been referred as his health visitor believes he may have autism. I would like to ask you how your child who has autism is with his siblings? myself and i we’re currently trying for a baby and since the health visitors appointment my husband has now said he think we wouldn’t should have any more kids as it wouldn’t be fair on the son we already have. We are new to all of this and don’t know a lot so any thoughts you have would be really appreciated as i still want to try for another baby.
I have one more question though: As your son was diagnosed a while ago I suppose he has been getting therapy since then? Do you have the impression that this has helped him? I mean has it for example improved his social skills? This would make it a lot easier for me to face the fact that my daughter might be autistic. Thank you (or anybody else who feels like answering ;))
My nephew is now 3 years old we have has suspicions of him being on the spectrum from around 18 month old mainly because myself and my sister in law have worked with children that have autism. We went through the health system in order to get a referral, there is about a 3 year waiting list. Very frustrating! On top of that he is non verbal and he is still on the waiting list for speech and language therapist. They live in London so that likely the reason for the long waiting periods.
How frustrating for you! Sending hugs x
My 10 year old son has Autism he was diagnosed at 5 and a half. We're near the end of a diagnosis for his sister who is 14. She went to secondary and struggled so much and fell apart. Hence we then thought there's something going on. We're at the start of the process for our 3 year old son now. So all very over whelming with lots of paperwork at the moment and in the middle of a ehcp for our son x
Good luck with it all, I hope you get answers soon x
I hope you get some answers soon x
Thank you x
My daughter was diagnosed as having a neurodevelopmental disorder aged 4. They said it could be autism but didn't specify. Although she was also diagnosed with a genetic duplication which causes learning disabilities. She is now 7 and getting school to recognise anything is wrong with her is impossible. Every year I have to go through her issues with her new teachers.
Oh bless you! It’s hard work when you feel like you’re banging your head against the wall isn’t it x
Amazing video! My son is on the spectrum and as developed a tick. As anyone else or anyones children/family members etc developed a tick ? Wondering if its autism related.
Yes my son has ticks. Hes 3 years old. It reminds me of tourette's. He makes these random weird noises and his face contorts. It's as if hes no control over it. Hes got autism too.
My son is 4 years 💙
Thank you for sharing your story/experience. We are at the referral stage waiting for an assessment through the educational route.
So much of how you explained you felt during the journey has rang true with me. I have felt so many familiar emotions.
Lots of what you have described as Will’s signs are the same as what my son is exhibiting.
We know we have a bit of a wait now but we have a great support system in family and his school.
I would be interested to know where the journey went after diagnosis. I know every child on the spectrum is different but we have no idea what will happen afterwards- if of course he gets a diagnosis. His school have put certain things in place for him so I guess it would be more of the same?
Yes, I didn’t mention much about that, did I? I’ll put together some content x
Mummy of Four UK but what you did say filled me with confidence... that will is thriving. I look forward to hearing more x
Im thinking something with my 2 year old he doesnt speak at all yet he uses my hand to do things for example if he wants a drink or a snack he will use my hand to get the bottle ect, he wont wear shoes or socks he shakes his head all the time it looks rather strange from an outsider.. i have been trying to contact my health visitor but can never get through do u think i need to speak to a dr?
My son has to have routine and a few days notice if we’re doing something and I shop at the same supermarket because I know he will eat there brand
Routine helps all children I think, but it’s essential to children with ASD X
Do your children ever mask or fawn in certain situations, especially if they are uncomfortable?
How do I get a diagnosis for my youngest child of now 15mths 1 week? I have older 3 kids who had/have behavioural/learning but the 15mth olds father has autism spectrum in his family and nystagmus in the boys. I've had various issues her pulling back/twisting, screaming during breastfeeding I breastfed my others till 12mths approx my eldest had texture issues and they all are fussy. Baby had projectile vomiting after introducing formula had trouble with the teats and flows she still suffers with chronic constipation but is on daily laxatives that help and i was given infant gaviscon for the reflux but it made her struggle to breathe as it was so thick eventually around 10 months she calmed down but even after introduction of solids it still was an issue till around 12mths. She was later sitting unaided around 8mths,crawling started in feb about 12mths but she can now walk and is 15mths. Physically though tiny compared to ones her age people perceive her to be 'normal' she can clap wave bye even points when im singing point to the ceiling, but i still have concerns with her eating she will take 3/4 mouthfuls i do majority homemade meals blended a bit. She did a twisty wrist thing starting from about 2 weeks old he hands are always busy but she does do something with her fingers now. She can say a couple of labelling words after repeating me but its mostly babbling. She is getting better with prolonged eye contact but usually watches my lips she loves me singing and listening to music. Anyway was reffered to nurologyist on nhs a few months ago i told him what behaviours she'd had but he wrote a letter to my dr saying shes got bit of stranger anxiety but it giving good eye contact and smiling but he saw her on a good day not when she was tired and I was thinkig they would put her in front of machines like they do in america but there was nothing only a quick examination he patronisingly said ill get someone else but that they dont do testing for autism here! Its been swept under carpet because they want me to wait till shes at school full time but my 11 yr old has learning difficulties and I believe they all have adhd including me but my drs have always fobbed me of probably because they think im a hypochondriac with anxiety. She can be very hard to console when she gets into a state usually when shes tired she wont let me hold her closely and often pushes away nips and scratches usually goes for my eyes but i understand other kids do this screaming nipping scratching I know she understands more than she can say it's deppressing to think wont get any early intervention the health visitor is the only one they take seriously it took from her being 5weeks old till getting the infant gaviscon at 8mths old especially with her being a girl I'm worried she won't get a diagnosis like me and her older siblings. I do my best as a lone parent of four i sing a lot, done bit of bsl from 5mths and take her to sensory room and messy play at local childrens centre I've felt for sure from a few weeks old that things were not usual with this one but nobody really listens. Violet 15mth 1 wk will thrive with or without support but i really could do with early intervention 🤧
I was diagnosed with level 2 autism when I was 3. But I was born with it.
The system is now avoiding the term 'Aspergers' as Dr Asperger was a Nazi eugenics doctor who executed all 'low functioning autistic people' but kept the high functioning for experiments. The preference is now ASD autism spectrum disorder. Yeah! I'm learning at lot. Might be of help?
When did your daughter start talking in full sentences?
All very helpful. I came here in desperation after my son's paediatrician quit after 2 years of giving us the run around. How did you refer into getting a diagnosis? How would I get one without the input from a health visitor?
Where we live, if your child is over age 5 you have to go through the school not the GP.
I totally understand you Jade. My 2 year old daughter has typical autistic symptoms and we have tried speech therapists and paediatricians through the NHS. My experience with the paediatrician was that they asked does she do this or that and then after questioning, she kind of said, she is young and we will review her after 5 months or so. This was done over the phone and we as parents could not visit the paediatrician because of covid restrictions. My experience with the speech therapist was that she gave us some good advice, in that they gave us tips on how we can try and make her look at us as parents, because she would always avoid eye contact with us.
We had 4 sessions with the speech therapist (once again over the phone), but after that she said we will have to review in the next 5 months or so. Interesting thing was the speech therapist never said to us I think she may have autism, despite telling her that she does this and that. The paediatrician kind of said in an indirect way, "Has your speech therapist mentioned that she is on the autistic spectrum". But none of them seem to say we need to send her to a centre where she can be tested for autism. I have a strange feeling that they don't want to diagnose my daughter because she is 2. So I don't know what to do? Our health visitor knows that my daughter saw a speech therapist and pediatrician, but there doesn't seem to be any action, perhaps because of her age. Sorry this is long winded, but I would love to know what other help can we get?
Here Rhi ❤❤
Hi lovely 🥰
You said you got the number for the assistant of the consultant and rang daily. What did you say when you rang that got things speeded up?
I was super polite and apologetic for being a pain, but just asked of there was any update x
@@MummyofFourUK thank you, gonna try this!
My son got pip
We are still waiting for our first appointment. 38 week wait...😣
Oh nightmare 😩
Same 1 year wait here due to covid
I have Autistic and dyslexic
if i have my first child with autism will my second have it as well?
Not necessarily but the likelihood goes up x
By what age your kids started to talk
They all had some basic language by their 2nd birthday x
hI, I am autism mum too, i run support group for mothers in my community, i would love to connect with you, i invite guess mum to zoom meeting to share experience with the mothers and advice.
🫶🏻
It usually come from males in the family
Rachel de Haan completely false
Really oh my we’re does it come from
Rachel de Haan for absolute sure they do not know the specific cause of autism. Some say genetic some say environmental factors some say age of parents some say linked to stomach health some say _______ there is no concrete reason why
Mandy Uk ah ty
They seem to be constantly coming out with new ideas about what causes autism, but the truth is, I don't think they are sure x