So stressed about DS3 likely autistic

[Mysweaterisonbackwardsandinsideout]

My lovely DS is 3 and it’s looking very likely he’ll be diagnosed with autism. He’s speech delayed and delayed with his communication and interactions. He can talk but he’s miles behind kids his age and never answers a question or has a conversation.

I feel so bad for him. All I keep thinking about is way into the future. Can he get a job, enjoy travelling, can he live alone, get married? etc. I know I’m being ridiculous looking that far ahead but my mind just keeps going there and its consuming all my time.

I keep feeling bad on my older girls. They’re 8 and 10. They’re now aware of him being different and I can tell they they’re concerned.

Often I feel like this payback for me not just being happy with 2DC. He took almost two years to conceive with multiple miscarriages before and I keep thinking maybe it was a sign.

I just wish I could see into the future.

Sorry I know this sounds so dramatic but I’m wondering if anyone else has felt like this?

Lots of us have autistic children. Your child may not develop at the same rate as other children but that isn’t to say that he won’t grow and develop. He’s autistic but he’s still his own person. It’s hard though so please have a hug from me.

Thank you @Clubbiscuit I feel bad even thinking like this as know other parents are dealing with so much more.

@Mysweaterisonbackwardsandinsideout there are different levels of autism. Not sure if that's the right way to describe it x sending hugs to you both x

I was so worried when my dd was 3 and not speaking or making eye contact

Now shes almost 7 and picking up language. She has her autism diagnosis and its embraced and I wouldn't change her.

You will feel differently, it'll just take some time and the right interventions. The main thing is that you get the right support and you'll watch his little life flourish

❤️

@shellyleppard That’s true, I just wish I had some idea which level!

@mumofoneAloneandwell Thank you so much. I’ve thought something was going on since he was about 18 months but everyone kept saying he was fine. I think it’s now just hearing other people saying it.

My son was diagnosed aged 3. He sounds reasonably similar to your son. I understand all your worries and concerns. I felt the same. I cried a long time after diagnosis.

No autistic child is the same but I can tell you my now 14 year old can speak well, ride a bike, will sit 9 GCSEs and talks (nervously) of going to uni.

He struggles socially, is anxious, won’t achieve grade 9s and who knows if he will leave home… but he’s miles ahead where I envisaged age 3 so there’s so much hope xx

I had the same experience with people denying it but I just knew

Now, I have my own autism diagnosis! Through her I found myself

Everything for a reason, op. I completely understand how you feel, but you'll get through it and will even find yourself enjoying his little quirks - it just takes time xx

@Bogfrog Thank you, just what I need to hear. Of course they’re all different but it gives me some hope. I hate the thought of him feeling different in a negative way or missing out on anything.

@mumofoneAloneandwell I have been trying to tell myself there’s a reason for it (even though I don’t usually believe in things like that). I of course wouldn’t change him unless it made things easier for him. I just can’t picture him at school in 18 months let alone anything else.

@Mysweaterisonbackwardsandinsideout my son wasn't diagnosed till he was 19. I had my suspicions about possible autism for years. School were very unhelpful but he just plodded on. We had a few rough years until I insisted he get help. We had a lovely doctor who understood him and his worries. Hes on medication daily. Going to college studying engineering. Volunteer work at a heritage railway. Yes he still has bad spells but no where near as bad as before x sending hugs you and all the parents on here x

Of course, you wouldn't be worrying and unfairly blaming yourself if you didnt love him!

Fwiw mine didnt go to mainstream school - were having a battle now as I moved, but she went straight to a special needs class which was a godsend

I couldn't imagine her in school either, and I was right. Early diagnosis is key, and you can discuss options at your appointment - theres other ways he'll learn x

My son does feel different but I think he copes ok with it by regular affirmation from us and his teachers and recognising “normal” people can be v annoying 😂
He was in a regular state school until year 5 and then we moved him to a private school which I know isn’t an option for all but smaller class sizes and a good senco has been great.

My DS1 was diagnosed with autism when he was 7 (he has very high functioning autism), his brother DS2 was present when we were given the diagnosis. He was 3 at the time. DS2 was clearly autistic - I had known he was from about age 2 when he was still non-verbal, only flicked car wheels in front of his eyes rather than playing etc. The doctor said to me when DS1 was diagnosed that they would have given DS2 a diagnosis there and then if they had been allowed, but they were the school age team. They said they would put him on their waiting list for diagnosis, so that by the time he got to the top of the list he would be diagnosed.

He was therefore diagnosed at age 5. But because I knew from age 3 that he was autistic I started treating him as if he was autistic then. I spent a lot of time introducing him to eat different foods, giving him routines but also teaching him what to do if a routine had to change. The diagnosis team were quite impressed that when they asked him what he would do in a situation he could give them a list (that I had taught him).

He realised he was autistic when he was about 13/14 and started reading up on it which helped him understand why he found things more difficult than other people. He learnt how to cook his favourite foods (aka pasta) although does need reminding to actually watch what he is doing and not wander off. He is now 19 doing an OU degree, and has travelled abroad on his own. He likes the security of studying at home, but I am sure he will leave at some point.

He is totally different to DS1. But don't despair just because he has a diagnosis of autism. Yes it can mean he will never leave home independently - I have a friend whose adult child has just gone into residential care because of his autism. But it isn't a foregone conclusion.

@shellyleppard Wow that’s amazing. He sounds great. What was he like as a toddler/preschool?

My autistic DS is now 12. He is also DC-3, two older sisters as well, they get along like most siblings, sometimes they are laughing and playing together and cracking jokes, other times they argue.

At age 3 he was non-verbal and nowhere near toilet trained. We worried he would never speak, not have friends, a family, be independent. He is fully verbal now, albeit with a quirky sentence construction and sense of humour. He struggles somewhat with communication and did struggle socially in mainstream primary, but since starting his specialist secondary school is gaining confidence, developing more social skills and has a group of friends that he plays with. They do life skills classes, he is developing his independence. He is practicing travelling on the bus to school and I can see in a year or two he may be able to do that journey independently. I do not know what the future holds, but I am hopeful that he will perhaps be able to live if not independently, in supported living, have a job, some friends and possibly a partner if that is what he wants.

DH is autistic and non-verbal until age 7, we are married with 3 kids, he was in his thirties when we met and we have been together twenty years. I can remember when my DS was first referred for his autism diagnosis, DH was distressed and blamed himself. He was very worried for his future. It is normal, we worry for all our kids.

Neuroplasticity is lifelong and your pre-frontal cortex continues to develop into your late twenties or early thirties. There is time for your DS to grow and develop into whoever he will be, and whoever that is I am sure that he will have the love and guidance of your family to support him.

It's natural to worry and of course we want life to be easy for our DC but honestly nothing in life is guaranteed, for any child. We can only try to enjoy and accept our children for who they are, now.

In the right environment autistic children can and will flourish. Getting them into the right environment can sometimes be the hard bit. Their needs change as they grow. It's not always linear either. Try to relax and go with the flow a bit. I spent so much time worrying about the future that it stopped me from fully enjoying the present.

@Mysweaterisonbackwardsandinsideout nursery he was hyper focused . He hated mixing in (school play etc). Pretty much the same all the way through school life. But now he's a totally different person. @Choconuttolata made an interesting point about the brain still developing even into the 30's. Sending hugs x

Thank you everyone. I feel a bit silly now but I think it’s all just hit me tonight. This week I’ve had two meetings with different settings and they have both suggested they’ll be a diagnosis and that’s the first time I’ve heard anyone say it. It’s usually only been me banging on about it all this time!

Chances are he will be a functioning adult but you don't know. And you cannot know so you might as well not worry about it and let life go on.

I often think of a mother and boy i met with DS at a post diagnostic playgroup. The 2 boys liked the same toys and played together, both non verbal. We didn't stay in touch but I came across her recently campaigning for a charity. She talked about her non verbal almost adult son who had always attended SEN school. My DS is an A student, a good athlete, popular and very charming. He has his issues believe me but most of the negative stuff is at home when the mask comes off. There is nothing but pot luck and fate that explains my different outcome from this woman. We both expected to meet somewhere in the middle. What I'm trying to say OP is you cannot know and can only deal with what you can control right now. Early intervention can make a big difference and you will get better and managing him. Try not to look ahead, most people even with NT children panic at the thought of their baby being an adult.

I think because he doesn’t show the more obvious signs I’ve read about other people haven’t noticed what I’m seeing straight away. Everyone has just been saying it’s just a speech delay.

@Dontlletmedownbruce Thanks, such good points. I really need to just take each week/month as it comes. He is progressing so much in his own way and he’s so happy.

It is a lot to process and it is natural to worry.

I wouldn't say it is easy. But my DC1, in a similar position to your daughters, now has her own autism diagnosis and is at uni studying law and aiming to be a SEN lawyer. Her little brother who was nonverbal at 3 is studying science A levels. I don't know what the future holds either, none of us do, and I still worry but I can promise you things will change, he will develop. As he gets older he will be able to communicate more in whatever ways work for him, and you will learn to understand him & his needs better, which will make everything less chaotic and smoother running. At that age DS felt wildly unpredictable but it doesn't feel like that now.

@Miskast Thank you. It does feel very unpredictable and it’s hard to imagine anything else. Your kids have done so well. It really reassures me. I know so little about neurodivergence or SEN and it feels very overwhelming. So glad I posed though x

It could just be a speech delay. Don't jump the gun. Just do your best by him and love him, and see what happens. My DS did not talk until 4 and is not autistic. So there is a vast array of outcomes. Good luck with it all and enjoy your little one. I wish mine was 3 again.

I don’t have the energy for an in depth reply right now but just wanted to say that all of my dc are autistic and they are awesome. Dh has subsequently been diagnosed too and I’m adhd. My dh has a very high salary and has found his niche. Keep an eye on your dds - they are much more skilful when it comes to masking and the difficulties tend to start later. Prioritise mental health above all else.,