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Parenting

Autistic toddler!

79 replies

Sumy · 17/03/2023 17:38

My son is 2.7 years and I have just found out he is autistic, typical symptoms, no pointing, waving, flapping arms, no speech and understanding. Plays with wheels of toys and runs from other children. I don’t know how to deal with this. I’m finding it hard to accept, can anyone with a toddler with similar symptoms give me some positive stories please.
posyituvity: he is a lovely smiley, cheeky little boy, great eating and sleeping. Loves going for drives as he is fixated on vechicles, very mischievous, blabbers, if it wasn’t for delayed speech and not following instructions we wouldn’t have figured it out.
emotional mum!

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Sumy · 17/03/2023 19:36

Thank You
what sensory issues did your son have if you don’t me asking?

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Sumy · 17/03/2023 19:38

Thank You

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Bex268 · 17/03/2023 19:39

My little boy is 3 and is autistic. Sounds very much like yours. I agree about an OT - I have found ours invaluable! Where are you based?

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Sumy · 17/03/2023 19:39

Thank You

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Sumy · 17/03/2023 19:42

Thank You so much for your daughters positive story. At present I’m finding it hard to accept and how to move forward. Your post gives me hope.

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Justbecause19 · 17/03/2023 19:43

He sounds so similar to my DS who is 3.5. I will say since he turned 3 we have started to see more in terms of sensory and fussy eating. Now I would say it's more obvious he is autistic then it was a year ago. Try and surround yourself with positive information and as many positive people as possible. Also be kind to yourself, it is a lot to process. It took me a while to get where I am.

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Thehonestbadger · 17/03/2023 19:47

My son was 3 last week and was diagnosed in January. He sounds very similar to your son.

It’s hard to accept. I’d recommend reading ‘welcome to Holland’ by Emily Kingsley. It’s not long but it hits the nail right on the head.

We recently had our son allergy screened it cost about £100 but showed he was having a strong anti body reaction to dairy, made sense as he had CMPA as a baby. He’s been off it a week so far and seems a little brighter and more engaged.

in the last month or so he’s got much better with his eye contact and started responding to me shouting ‘no’ or ‘stop’ which is amazing and he’s also started handing me his drinks cup when he wants more and putting his arms and legs into his clothes (with help) we’ve had a few attempts at words too but nothing concrete.

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switswoo81 · 17/03/2023 19:48

Of course you are because right now you are in the hardest place ever and so much is uncertain..the future is terrifying so please if you take nothing else from this focus on one day at a a time .
Until her 4th birthday she had no concept of a birthday this year she is already looking for a spiderman cake.
Same with Christmas.
She is still very obviously autistic we make a point to celebrate every single win.
Like today she got her face painted for the first time (st Patrick's day). I told the face painter she was autistic (a huge step for me because I couldn't cope with that at all) and she was absolutely delighted.

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Thehonestbadger · 17/03/2023 19:52

Also I would highly recommend finding other autism mums in the area. Our city has a WhatsApp group of pre school autism mums, there’s about 40 of us and it’s lovely because we are all in the same boat. A few of them work in places we frequent and we pop in and chat, it’s lovely having peers who are similar makes you feel less alone. I found mine on Facebook by joining neurodiverse support groups in my area X

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HuggingtheHRT · 17/03/2023 19:53

I cannot tell you the road ahead is easy. There's a lot of advocacy you have to do to get what you need for your child. But a lot can change between two and 18....

My DS is 9. Barely spoke until he was 4. Lots of sensory issues which caused developmental lags and challenging behaviour. But he's come on enormously. He's a very loving boy with a cheeky sense of humour. He can speak (albeit, a bit less ably than his peers, but he manages.) He can read. He can swim. He is great at maths. He's great at visual thinking. He attends a mainstream school and has a very 'spikey' profile - off the chart in some areas of Learning and way behind in others. (That's pretty typical of autistic kids tbh.)

There are challenges - social skills are a bit hit and miss sometimes. We have to work at balancing sensory load. He does need help with some areas of development. But there's SO much potential.

Recommend claiming DLA and using the funding to access private therapies are you need but can't get on the NHS. We had regular private SALT appointments. And when that was no longer necessary we started having sensory integration therapy with an OT. This has paid dividends.

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Boopydoo · 17/03/2023 19:54

Hugs to you, Mum of a 25-year-old about to go into a partially assisted house share with another autistic lad and an 11-year-old forging his way through his first year at secondary.

You are allowed to grieve, with both diagnosis I felt relief but also a great sadness for I'm not sure what, but I know it was sadness all the same.
Now, its hard to comprehend how low I felt with it all, both boys are amazing, it's been hard work, but it's also so very rewarding.

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Thehonestbadger · 17/03/2023 19:54

Here it is

Autistic toddler!
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FirstFallopians · 17/03/2023 19:55

Sounds a lot like my dd when she was a similar age.

She’s 5 now and her speech has really come on- still delayed but she has enough to tell us what she’s feeling, what she wants, when her brother is annoying her 🫠 The NHS SLT who works with her is confident that more typical back-and-forth speech will develop in time.

She has a classroom assistant for 15 hours a week and the change since she’s started p1 has been incredible. She enjoys school, and the other kids are totally unphased by her, they just accept her the way she is.

Dd was always a great sleeper, which I’m glad to say hasn’t changed- she’ll sleep for 10 hours a night with no wake ups. She was much quicker to potty train than her NT little brother (it took a few days at 3 years old), and she’s as independent with personal care as you’d expect a five year old to be- taking herself to the loo, washing hands, brushing Getty etc.

I found things very difficult when it became obvious when she was about 2 that she wasn’t developing typically. But actually…it’s fine? Life isn’t hard for us, we just adapt things slightly differently for DD. We’re very happy.

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TuesdayJulyNever · 17/03/2023 19:57

My advice is to learn to read scientific journals so you can spot the horseshit and snake oil merchants. It’s intimidating at first but a good tip is to read the first paragraph of the discussion section, and then look for other articles that reference it to see what other researchers think.

My ds has asd, adhd and a pda profile (the last one is undiagnosed) and he’s a fun, thoughtful, interesting person. He’s honest and straightforward, passionate and a very original thinker. If you can focus on the fact that your child is having a hard time, rather than seeing him as a child giving you a hard time, it will make it easier.

I would recommend getting an occupational therapist to help identify a sensory profile so you can better understand why some situations or stimuli are difficult, and what accomodations he might need. ( I wasn’t impressed with sensory integration therapy and would give that a very wide swerve.)

Apples usually don’t fall far from the tree and it’s worth looking at whether you or his df might have some subtle neurodivergent traits. Figuring out what your strengths and weaknesses are, where you need support etc is just as important as anything else.

Sorry - that’s a very full throttle response. For now, sitting with your feelings and maybe finding a safe place to talk this through, is enough.

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LittleBlueBrioTrain · 17/03/2023 20:01

My son was diagnosed at 2.7 as well. We had suspicions at 18 months, it was obvious by 2. At 2.7 he was non verbal and I wondered if he'd ever speak.

He's now 4 and the most delightful little boy. We have been very lucky in that his autism actually makes him quite an easy child. He's very predictable, easily entertained and so loving. Oh and he doesn't stop talking now! His verbal communication is still significantly delayed compared to his peers but he's able to communicate his wants and needs which made life so much easier.
His sensory needs are significant yet subtle. If they weren't being met he wouldn't be anywhere near as easy as he is. I'd also suggest an OT assessment as they will likely pick up on things that either you're not aware is a sensory need, or like us, just don't realise you're already fulfilling!

There are days when it's harder. It's full on. Other than nursery, we have no childcare. I can't just leave him with my sister or his grandparents. Having to battle the system at every turn to ensure he can actually access an education is exhausting. But I am his advocate and I will do whatever it takes to get him what he needs.

I also echo what the other posters say about learning about autism. I consider myself very lucky to work with several autistic adults who are happy to share their experiences and how the world is for them and that's invaluable. I always recommend a book called How to Raise a Happy Autistic Child and the chris packham documentary Inside Our Autistic Minds on BBC iplayer is worth a watch, particularly the first episode which features a guy with no verbal communication. Be prepared for it to be an Uemotional watch but in the very best way.

Most of all, cherish every wonderful moment. I will never ever forget the moment my son cuddled me for the first time at 3 and a half years old. We were playing in the park as usual, I was sat on the floor and he just came up to me, put his arms round my neck and gave the tightest cuddle....and I cried like a baby and looked like a right twat 🤣

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jannier · 17/03/2023 20:08

davegrohll · 17/03/2023 19:32

I didn't realise you could cure autism 🤔🙄

You can cure anything with money send me some and I cure every problem you will ever have from my holiday home in the Maldives

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Mybrotherwhohasautism · 17/03/2023 20:32

My brother has autism he is in his 30s. He did not speak at all until age 4. He was able to attend mainstream primary but had to leave mainstream secondary due to bullying, but then managed to join a sixth form and ultimately went on to obtain a higher degree and a professional career.

My parents were very focused on his functioning and did brilliantly on advocating for his education. He is very intelligent and a very deep thinker, very insightful. He's also polite, kind, generous, funny (he's good company) and actually on a deep level he's very empathic. He has no social life outside of online gaming and our family but is very well loved within our family and he's a fantastic brother. He's achieved a lot more than my parents may have feared for their non verbal and obviously autistic 3 and a half year old son.

However, he struggles a lot with mental health, self esteem, self care and poor sleep. Things like making small decisions are absolutely paralysing for him and cause him a lot of stress. He misses out on things because of stress/indecision. He has confided in me that he has been close to suicide (in the past and typically around social anxiety) and sadly this is common amongst so called "higher functioning" autistic people. He finds it all but impossible to share how he feels or ask for help. I say all of this because if I was to travel back in time I would encourage my parents yes he is going to be wonderful, yes he will give so much to your family, yes he will even have higher qualifications and a career that allows financial independence. But, I wished they thought beyond "functioning". Could they have done more to prepare him for good mental health (we had quite typical nineties parenting very emotionally unaware / suppressed "don't feel, conceal" - they should have had counselling themselves really). His self esteem should have been top of the agenda and I sort of think that "being less obviously autistic" was top of the agenda instead. Bullying was so toxic to him it should never have gone on as long as it did.

So I am trying to say, without meaning to scare you (and actually I think one of my parents is sort of chronically mentally ill / personality disordered which is certainly part of the issue for my brother), is that it may be even more important than for parents of neurotypical children that you are aware of how to foster emotional strength, self care, good mental health, a positive inner voice etc. I'm afraid I don't know of the best resources around this for parents of autistic children I just wanted to emphasise because I usually see parents of children with autism, especially young children quite focused on functioning, education, attaining skills etc and I just think the other side is really important too. You've plenty of time. Best of luck to you and your little boy.

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Sumy · 17/03/2023 20:40

I Am so sorry to hear that, it’s definitely devastating news, the expectations we have for our child changes drastically and that’s a hard pill to swallow.

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pizzaperfection · 17/03/2023 20:50

Hugs to you OP, we have all been there.

Our DS was diagnosed when he was 3.5 years (nursery flagged and we sought a private diagnosis).

His report described his needs as "moderate". The most notable thing was that his speech was delayed. He was also a late walker (which we now know is related to having low muscle tone - very common with autism).

He is now almost 5 years old and in reception in a main stream school. We cannot believe how much his speech as come on, we can have full on conversations (although they tend to focus around his special interests) - this was honestly unthinkable at 3.5years.

He is thriving at school, although he doesn't have a set group of friends yet (I don't think many of them do at this age). He loves the structure and loves learning.

It's not all plain sailing, his emotional regulation is poor. We've had play dates and birthday parties where he just melts down - but we are learning to understand his sensory preferences and coming up with coping strategies etc. We are really working on him understanding feelings, both his own, and others.

It's not been very long for us (only 18 months since diagnosis) but that "spikey" development that is common in autism can surprise you.

It is different for everyone. Let yourself grieve, DH and I were very down with the news initially - it lasted for about 6 months. I used my work's Employee Assistance Scheme for 6 sessions of counselling. We cried. My mother cried when we told her. But now we are in a place of understanding (and improved knowledge) and feel much more positive about our son's future.

In this process we have also realised that we are both most likely on the spectrum too - but we don't have the money to go private or the patience to go on the NHS for a diagnosis.

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Sumy · 17/03/2023 20:59

Justbecause19 · 17/03/2023 19:43

He sounds so similar to my DS who is 3.5. I will say since he turned 3 we have started to see more in terms of sensory and fussy eating. Now I would say it's more obvious he is autistic then it was a year ago. Try and surround yourself with positive information and as many positive people as possible. Also be kind to yourself, it is a lot to process. It took me a while to get where I am.

Thank You so good to hear your boys thriving.

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Sumy · 17/03/2023 21:01

Thank You

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Sumy · 17/03/2023 21:07

Thank You so much, your son is inspirational as my sons made symptom is speech delay with understanding. No one would guess he has it as he flaps mostly at home. Praying we see spiked progress too x

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Sumy · 17/03/2023 21:13

East London

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Bobbybobbins · 17/03/2023 21:16

We have two DS with autism who are 9 and 7. The elder started talking at age 4 but his speech is still delayed. He is at a mainstream school and can now read, write etc. Our youngest has just started with some speech in the last few weeks (!) He is now counting to 10. He is in a special school and is much more obviously affected. He is the most loving little boy. But life is hard!

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Sumy · 17/03/2023 21:47

Thank You so much

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