DS newly diagnosed as autistic

[Gruffado]

DS was given the official DX 11 days before he turned 3yo (November 2019). I keep hoping they've got it wrong or he will grow out of it. I read about other parents who say they wouldn't change their child or take the autism away, and I honestly think "what!! Are you serious??" I don't know if feeling like this makes me a bad parent. My son doesn't have all the obvious traits, his main ones are delayed language and social communication difficulties. Some would say, that's the definition of being autistic, but I can't help but be hopeful. Maybe it's my coping mechanism. I've been to 1 or 2 parent and child groups to meet other parents but haven't made any friends yet. Any wise words out there for me??

PS. I'm just joined this site today and not familiar with alot of the abbreviations use the KISS method for me. Do you understand the irony??

Honestly? Accept your sons diagnosis. It's hard to get a diagnosis so young, so the drs have seen traits that warrant a diagnosis. I am one of those mums who would not take away my childs autism, it makes her who she is. I am also autistic. My husband is likely autistic. My youngest is being referred for assessment as he is showing traits. Autism is not, in and of itself, a bad thing. Society is not set up to accept people who are different however.

Having said that, it sounds like you need time to accept it, it's not going to be overnight. But a diagnosis opens doors to additional help. Especially in school. He will not grow out of it, he may learn coping mechanisms to be able to function in settings which distress him currently, but that does not mean he will no longer be autistic.

It's worth looking up the hash tag #actuallyautistic on social media, as you will find posts by autistic adults who have lived experience to share.

Please, accept your boy as he is. He will already be seen as 'different' by so many people, be his biggest advocate for him to be himself, be his safe space where he can learn who he is and let him develop at his own pace. He is still your boy, a diagnosis has not changed that, and all the things that you love about him are still there. Many of the things you love about him will be because he is autistic, not in spite of him being autistic. Would you feel comfortable sharing some of his awesomeness with us?

Hi Dinosaur of Fire
Thanks for replying. My son is fantastic at reading, he can read big words too "great food, amazing prices" he read on a supermarket flyer. His first words were numbers 1-10. He's amazing at colouring in and can happily draw for hours. He loves cuddles, although this is getting less. He likes dancing to cbeebies tunes. He's a very happy child. I am grateful for that, he can sing songs and name things but can't use functional language. We love him alot, I just wish we could have the conversations that a parent usually has with a toddler full of wonder and curiosity.

Wise words from DinasaurofFire

I’m also autistic (but late diagnosed). I really wish I’d known from the beginning - so many aspects of life would have been easier.

And maybe my parents would have liked me a little more....

My main piece of advice is to develop a thick skin and perfect your arched "got a fucking problem, mate?" eyebrow because there will be times when you need them. Your parenting will be held to a far higher standard and level of scrutiny than that of parents who have NT (neurotypical) children. You're expected to be saint-like - "I don't know how you do it! You're an angel!" - as well as omnipotent- "you should have known in advance that your child would act in this totally unpredictable way in which they have never acted before now!"

Basically, sometimes it's going to be rough and sometimes people are really going to piss you off. Thick skin, raised eyebrow. You are doing your best regardless of what Brenda in the supermarket thinks.

People will send you a bullshit poem about a holiday to Holland and they will say inane things like "God only sends special children to special parents" and "are you sure he's autistic? I wouldn't have known if you hadn't told me". They will ask what his super power is, I tell people my DS can fly but that we've told him not to do it in front of the normies. They will offer parenting advice ranging from benign (ban screens) to the batshit (good hard smack). Most of them mean well, I guess. Try not to take any of it to heart.

Get a good support group. The SN (special needs) boards here are always good for support and advice. Google the name of your area and 'autism support group', it'll bring up some local to you. If you're in NE England, I can recommend some for you. The National Autistic Society website has a lot of information that can helpful including reading recommendations.

It's not all doom and gloom. I wouldn't change either of my sons (both autistic) because I love them and autism is an intrinsic part of what makes them who they are but if I could remove the negative aspects of it and change the world to better support them, then I would. It's okay to be scared and worried about what the diagnosis means, it's okay to be a little bit sad about not having the child you thought you were going to have, it's okay to say that if autism was a person you would kick it square in the face but don't let these feelings distract you from your little boy. You'll find your way. My boys are funny, sweet, they give the best hugs. We have some truly awful days and sometimes I think the hugs are maybe their way of making sure I don't chuck them in the nearest bin but they're mine and I can't think of them as being any different to how they are.

And I know this last one is difficult but as a carer, make time for you. Even if it's just ten minutes with a cup of tea and something mindless on the TV, you need that time for yourself to let your mind switch off.

Thank you Hoik, I appreciate the humour, as warped as my own. I've had the poem hand delivered from a well meaning patient. We've signed up for the "early bird" course I believe it's runs by the NAS.

Speech and language therapist is brilliant and she has started to visit him in nursery now. I also have a 17yo daughter from previous marriage, she's going through uni applications. We also have the worst kind of step family situation going on where my DH and DD do not talk to each other, and complain about each other to me "why does he smoke in the garden, it travels to my.room" " can't she wash her own, cup, spoon, plate" etc etc
We do have good provisions being put in place, I think I needed some attention for myself (feeling ashamed)

I can understand that, it's the reality being different to what you expected and that can be a shock and take time to adjust to. Your son sounds fantastic, and how clever is he to be reading so well already! You may not have the conversations you were expecting or hoping for, but he will find other ways to communicate with you until he gets the hang of language. Social communication skills can be learnt, even if he doesn't use words himself he will be learning from you and the people around him all the time (as I am sure you know and have seen already). My son also loves to sing and dance along to cbeebies- his current obsession is Andys Dinosaur Adventures.

@scautish I was also diagnosed late (just under a year ago now). My diagnosis came as a relief, I too believe it would have been helpful to be diagnosed as a child. Luckily I had a mum who was accepting of difference, and come from a line of oddballs and non conformists so I was encouraged to develop at my own pace with my own interests. I'm sorry to hear about your experience with your parents, that must have been tough.

Another autistic person here. Another to whom the diagnosis was a relief. You have been given an opportunity here, early diagnosis means coping strategies in place for all of you.
As others have said, I wouldn’t change who I am, but societal attitudes need to be changed.
My mother regarded me as ‘difficult’ and was incredibly unkind, you’re here asking for help, that’s really positive and means that together you can ensure he reaches his full potential.

How did you potty train your boys? We got the "Pirate Pete" book, which he absolutely loves, but it hasn't made the connection for him. HV adv to place him on toilet when he wakes up as his nappy is usually dry. That worked and he does 1st wee of the day in the toilet, the rest can be anywhere, so we place the nappy back on.

Another diagnosed adult here, i have have 2 Autistic daughters, as relentless and stressful as it can be i wouldn't change who we are.

PS: you can't grow out of Autism

My ds was diagnosed age 9, I was diagnosed last October age 53. I found it hardest when myds started puberty, the teenage tantrums seemed ten times worse than any other boy's of the same age. At 3 my ds was obsessed with buses & timetables, he knew every route in the city& could tell anyone how to get anywhere, like your ds he
spoke well, could read before starting school, the main problem I had was getting him to sleep, he could go 3 days without sleep, I was on my knees & resorted to Piriton or Medised to preserve my sanity. Look to see if you have a sparkle group in your area where you can meet other mums with autistic children, I felt very alone because ds didn't get invited on playdates or to birthday parties & had I known about Sparkle then would have made use of it.

How did you potty train your boys?

Youngest DS is sensory avoidant and hated the feel of nappies, he more or less potty trained himself at around two and a half. He wasn't diagnosed then and I thought it was down to my excellent parenting

Oldest DS was around three and a half and very resistant to the idea so we didn't push it. We just left him in nappies but every time we changed his nappy we encouraged him to sit on the potty or the toilet for a few minutes before we put the new nappy on to help him build the connection between doing it in the nappy vs doing it in the toilet.

Pressed send too soon.

The goal of sitting in the potty/toilet was just to sit, not do anything but we gave him lots of encouragement and praise when he did do something. Then after a month or so of doing that we tried potty training him again (in pants all day, no nappies except for bed) and it was a disaster so we went back into nappies and sitting on the potty/toilet after every nappy change. Tried to potty train again after another month and it was much more successful.

Hi I’m also a parent of a little boy with ASD who was diagnosed when he was 3.
In all honesty it was a relief to us to get the diagnosis as it was glaringly obvious to me and I just wanted to get all the support in place ready for school. However I do get pissed off with the fb posts I see who rave on about how amazing autism is. Yes my ds is amazing but it’s bloody hard most days (I hide this from him)- his sleep is shit, I gave up my (v good) job to care for him, he’s still in nappies at 5, I regularly get hit/kicked, we are really limited on things we can do as a family. However little things like seeing him in his first nativity belting out the songs make up for this.
I totally agree with the thick skin, giving zero fucks about judgey parents and trying to keep a sense of humour. I’ve had to fight for everything so have become pretty bolshy and direct. What helped us was the NAS early bird course (still in touch with the other mums a year later) and finding local autism charities. We go to monthly trampolining and softplay events with other families.
Also if you suspect your child will need a EHCP please get the ball rolling now. Look for your local IAS as they will be able to give advice on this.

Great post by Hoik yesterday 23.36

Thank you all for sharing. Re potty training my biggest concern is the fact he has to wear nappies to nursery. I feel embarrassed about it, I haven't quite learned to "not give a ", some time ago I read that more and more children are still in nappies in nursery school and how it's down to bad parenting.

And re my earlier statement " I hope he grows out of autism", I'm fully aware you don't grow out of it. What I meant was perhaps if his language developed this will help in socialise, since those are the reasons he got the diagnosis.....
Parents often talked about having a gut feeling about their child having ASD, I can honestly say I never felt that way. We live in South Wales and since his diagnosis all the professionals have been great. I'm sure the school has applied for funding for 1 to 1 for home (need to find out for definite), I've reduced my hours at work to spend more time with him. What are thoughts/exp of ABA? It seems pretty regimental and intense to me, I'm not sure children should be reprogrammed like that.

@Hoik oh my god that fucking poem.

@Gruffado hopefully your son’s diagnosis will mean he gets support from day 1 when he starts school.

ABA is an horrifically cruel regime.

I'm nearly there too. Ds is 2.5 and has been in the system since he was 16 months at my insistence as it was obvious to me his development was regressing.
Although we haven't got an official diagnosis, the professionals involved have all agreed it's coming but it's only been his age that have held it back.

Its been hard but I'm now at the point where I've accepted it, theres nothing to 'fix' and he just needs extra help to get to where he was always destined to be.

And I wouldn't change him for the world, but I'll change the world for him.

I'm also in south Wales and I have to say that the support available is second to none, very lucky that they're on the ball here.

ABA is very controversial and many adults with autism who underwent it as children have expressed negative feelings about it. Personally it's not something I would sign my DC up for as there are more gentle methods of redirecting negative behaviours and making various adjustments can stop many actions from happening in the first place, for example one DS can be a terrible fidget as he's a sensory seeker so will want to do/see/touch everything. This can be very easily channelled with simple tools like fiddle toys, chews, ear defenders, etc. From what I have read about it, ABA is about adjusting the child to fit the environment rather than adjusting the environment to the child.

madasbirdsblog.wordpress.com/2017/04/03/i-abused-children-for-a-living/?iframe=true&theme_preview=true&fbclid=IwAR2DY5cm5r81SjoZgqLdBrKJ3-AqyVv3WxyovdU25_R0F7D_wkfkT-OFJnI This is a blog post from an ex ABA specialist on why ABA is traumatic and damaging for children.

Many autistic adults (around 80% I believer) who have been through ABA suffer from PTSD as a result. All behaviour is communication, even the difficult ones like meltdowns, what ABA does is teach a child to hide what is actually going on with them, takes away their autonomy and makes them 'appear' neurotypical, whereas a lot of autistic behaviours are actually coping mechanisms or signs that the autistic person is distressed/ excited/ overwhelmed etc. It originated as a gay conversion therapy.

Here is another blog post about it, from an autistic adult, which goes into it in depth too. theaspergian.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/

@halfbloodprincess
It's great that your little boy is already in the system. And you're so right about them being "on the ball", our HV had concerns at his 2yr review and offered us the choice of being referred then or wait till he's older. Working in healthcare myself I'm all for early intervention. I thought at best he won't really need it and if he is diagnosed then sooner is better. It was 10 from referral to when he was seen my the community paediatrician and then another 5 weeks when he got the diagnosis. So although we had almost a year of it could be, it still came as a shock to us.

I am also in South Wales!
Potty training- we are about to start with my son, I plan to treat it as I did with my girls and stay in for a week with pants on and going to the potty every hour at first, rewards of stickers on a chart then when he has a certain number of stickers he will get a Thomas Mini train. He is starting to tell me when he has been/ is going in his nappy now though. It's not bad parenting if your child is still in nappies due to additional needs, (although some people do like to judge) some children do take longer and if he hasn't connected what is happening in his body with the contents of his nappy yet then he may not be ready, it's worth trying gently to introduce the potty and talk through what you do when you go to the toilet, but you know your son best and whether he is ready or not.

@HalfBloodPrincess @dinosaurofFire
We live in Barry now, moved from Cardiff. We're looking at groups across the vale and Cardiff. We tried Oshi's world, my son loves that especially the sensory room. Any other hidden gems?

I think it’s a shock to get a diagnosis even if you were expecting it. It makes it really and you realise you don’t really know what to expect yet. You feel how you feel and that’s ok. It will take time to get your head round I imagine.
DD never got a diagnosis. She’s now an adult with DC of her own. I knew things weren’t ok from before she was two and just felt like a failure as her mother from the word go. Everything was an issue - eating, sleep, prolonged and violent tantrums that she didn’t grow out of, poor social skills. Educationally she was bright but clearly also had/had ADD and she was massively disorganised, untidy, inattentive. She was always in trouble at school and home life was such a battle. There was zero support and she was just a ‘naughty’, ‘spoiled’ girl and I was a shit mother. A disgnosis however hard to accept at first would have made life so much better as it wouldn’t have been naughty child of hopeless mother situation. My niece was diagnosed before 3 and she and her parents are getting so much support and input and she is already communicating more effectively with less frustration. Allow yourself to feel as you feel. You’re not a bad parent and DS will get support which is very positive .