Any other parents out there with a young autistic child?

[squirrel.]

Hi there,

Where to begin? I am mother to two beautiful children; my eldest Oscar is three and a half and his little sister Isla just turned one. We are trying for a third and final baby to complete our clan.

Ever since Oscar was a baby I knew that something was very different with my beautiful little boy than other babies his age. He didn't really make eye-contact, show emotion (unless tickled), didn't hit major social milestones and was so happy just to be on his own. I knew in my heart that it was autism too, but it took a long time to convince my husband, who has since admitted he was in denial.

We took him to the doctor who agreed he was very delayed and that was the start of a year's assessments that eventually led to his diagnosis of autism at 2.5, which is very young to be diagnosed we have been told, but his needs are quite clear.

Oscar is usually a delightful happy little boy, who is starting to speak a little and enjoy other people's company. He has always been a cuddly affectionate child (thank goodness!) who shows his love for us with constant hugs and kisses, but he never really wanted to play with anyone else (including us), which is now changing gradually. His sensory issues are mainly to do with sound and he hates certain noises that trigger an extreme emotional reaction in him. Oscar is generally well-behaved, but recently he has been pushing boundaries, especially with his baby sister (pushing and kicking her).

Raising him has been the most emotional episode of my life, with such moments of despair, where all I can think of is to just disappear into a hole in the ground. I wish I could say there have been equally high highs, but I am sad to say there haven't. I have never been happy that he is autistic (as some parents say they are, that they wouldn't have it any other way), this is never going to be okay for me, it still hurts so much when I see him struggling with daily life and having such huge emotional breakdowns where I just can't help him. I still occasionally wish so desperately that he didn't have autism, but thankfully it's only now and then now, whereas it used to consume me. I love my son so fundamentally, I wish I could guarantee him a good quality of life, but autism casts a cloud over his whole future.

I was wondering if there were any other parents on here with young autistic children (under five) who will be going through similar challenges at this age. His language delay is one of the biggest causes of difficulty for all of us and I just can't wait till he can speak properly..... if he ever talks properly...

 

[Reid]

Hello 😊
I have a 4 year old son we think is autistic (he goes for his assessment next month)
It was a bit different for me he hit all his milestones the first I was aware of anything was when he was 2 1/2 and went for his check with the h v he was behind with speech and I didn't think much of it he was doing a lot of jargon talk with some proper words. Not long after this we were referred to salt. Fast forward to now he's still very delayed speech wise but he's coming out with new words all the time and singing wee songs now his moods temper is a lot better though he still has his moments which are really difficult. He had been in a mainstream nursery but it wasn't working out well at all they had no idea how to deal with him we moved him to a specialist nursery for asd and speech disorders kids this has been the best thing I can't say enough about the nursery they are fantastic and he absolutely loves going and has made great progress there.
I understand how you feel I worry about my son's future as well but I try not to over think it I'm not one for stressing but sometimes things do get to you.
My son to is very loving he's also very full of energy all the time lol we are lucky he sleeps very well but we have had our hard times there to
There's a few autism mums on here and it's always a good place for help support advice or just a rant lol xx

 

[Thurinius]

Hi,
I am mother to a now four year old autistic son. We had a very different experience in that I had no clue he was autistic. I thought he had a speech delay, he didn't say anything till he was 3 and a half and so it came as a very big shock.
What we do have in common is that I've known for a year too that he is autistic. Even if you suspect it as you did it is a massive thing to come to terms with because it flips everything you thought was going to happen with your child. I think in a way it's a form of mourning and grief for the future you thought your child would have.
It's only now one year on that I can face reading books on autism.
And it still hits me with a thump to see what children my son's age can do and the massive difference.

However the good side is that since he was 3 he has come on so much. He now talks loads. He is far more interactive, his favourite activity is to curl up with me and for us to do the puzzles in his comic together. Something I couldn't have envisaged even six months ago.
As above there are loads of here in the same situation. Have a look at the developmentally behind thread because that's where we all tend to go to share our triumphs and stresses.
Lots of love and hugs to you xxx

 

[kealz]

Hi ladies

Squirrel, reading your post has brought a tear to my eye as I could have written that myself. Apart from the loud noises, my son who is 3 on Sunday is exactly the same. I always sensed there was something amiss. I have always worked with children so I really see the signs. We are waiting for assessments in the new year but in my heart I know. I am trying to prepare my husband to hear that he might be autistic and have encouraged him to read material about it. At first I think he thought I was over reacting until he read info and could identify so much with our son. We talk about it sometimes and it makes us both cry - I don't think it will ever be ok with us. If I could wave a magic wand and wish it away, I would in a heartbeat. We have such dreams for our childrens future and it breaks my heart to think he might struggle with the basics as he grows. Our son is such a beautiful and happy child and, just you described Squirrel, he is very affectionate which I have always been immensely grateful for because he shows and accepts love.

Personally, I struggle as I have to stop blaming myself. My emotions get the better of me and I worry that I somehow caused it. Did I not talk to him/interact with him enough as a baby? Did I not encourage his social skills? Do we not read enough books? Haven't I offered him enough social/life experiences? Is the telly on too much? I know how important all these things are and think I have tried/am trying my best to support him but sometimes feel like it's not enough. I feel somehow like the amount of progress he makes he totally down to me and I feel the full weight of responsibility for this. Then my head reminds me it's genetic and it takes a village to raise a child but as a teacher, there's a part of me that feels my child shouldn't have these problems.

 

[Thurinius]

Hi ladies

Squirrel, reading your post has brought a tear to my eye as I could have written that myself. Apart from the loud noises, my son who is 3 on Sunday is exactly the same. I always sensed there was something amiss. I have always worked with children so I really see the signs. We are waiting for assessments in the new year but in my heart I know. I am trying to prepare my husband to hear that he might be autistic and have encouraged him to read material about it. At first I think he thought I was over reacting until he read info and could identify so much with our son. We talk about it sometimes and it makes us both cry - I don't think it will ever be ok with us. If I could wave a magic wand and wish it away, I would in a heartbeat. We have such dreams for our childrens future and it breaks my heart to think he might struggle with the basics as he grows. Our son is such a beautiful and happy child and, just you described Squirrel, he is very affectionate which I have always been immensely grateful for because he shows and accepts love.

Personally, I struggle as I have to stop blaming myself. My emotions get the better of me and I worry that I somehow caused it. Did I not talk to him/interact with him enough as a baby? Did I not encourage his social skills? Do we not read enough books? Haven't I offered him enough social/life experiences? Is the telly on too much? I know how important all these things are and think I have tried/am trying my best to support him but sometimes feel like it's not enough. I feel somehow like the amount of progress he makes he totally down to me and I feel the full weight of responsibility for this. Then my head reminds me it's genetic and it takes a village to raise a child but as a teacher, there's a part of me that feels my child shouldn't have these problems.

That mirrors me too. I had a terrible labour with my son that went on for 88 hours and ended with an emergency c section and my son in neonatal.
we were both home a week later but I was pretty traumatised and it took me a long time to bond with my son.
then after we'd been home a fortnight our landlord told us he wanted us out.
so for my son's first few months of life I was extremely stressed and unhappy.

Like you I know autism is genetic but I can't help blaming myself.
I blame myself entirely for not noticing his asd and not getting help for him sooner.

But I love my son more than anything. I cant distinguish the autism from him, it is him. And I am on the road to slowly accepting this. But it's a long road.

 

[kealz]

Thursinius, I understand how you feel. I too had a difficult labour with son which like you ended in an emergency section. My nan keeps saying that his problems are probably a result of a difficult birth. I can't accept that, because that means it could have been prevented which really upsets me.
If you've nothing to compare to, then it is understandable that you didn't pick up on things earlier. My son, has had paediatrician etc involved since turning two but it is only now he is turning 3 that the support is kicking as this is when his nursery funding becomes available. Just thought I'd say because it sounds like your son has been acknowledged at the same age so is no worse off.

 

[mummy2lissy]

Hi all, we are awaiting an assessment in November but I too think the outcome may be that my son is autistic. He is 2 in December but there's just little bits of things that have been noticed by many doctors. The issue we have is that he has been put back to 9 months of age developmentally so his speech therapist says signs aren't shown at 9 months so I'm not sure where we will go from there.
My son was 13 months when he sat up. He has started walking recently at 20 months which isn't too bad. He used to babble as a small baby but now speaks no words. We have a 'ga' sound but that is all. He prefers to play alone at home and at nursery but doesn't play as such, he prefers to empty boxes, spin wheels on cars/bikes and open and shut things. He has started to get a lot better eye contact and also with affection. He has started to get much worse with pulling hair and hitting. He doesn't tolerate having his face washed or hair brushed. He's having to have a fork mashed diet and thickened fluids due to him not swallowing food properly and is constantly dribbling!
I'm really not sure what is going to come from the assessment but there is opportunity at the end, for him to attend the nursery for children with additional needs, if it is shown that his normal nursery can't meet these needs.
My partner is very much in denial about it all which is frustrating but it's looking to be the norm among them all since reading previous posts.

Can anyone else relate to any of the signs/actions? I'm constantly thinking and looking for things I can relate to in the hope of settling my mind and coming to terms with what could be. I hate the unknown! We have had countless tests and Appointments were things are so negative but still nothing has been said!

 

[bananabump]

Hi... My son Leo was 4 in August and diagnosed as being in the spectrum the say before his birthday!

He was non verbal until he was 3 and didn't even say Mummy or Daddy until he was 3yr3m which I found really hard to deal with. He now never shuts up but is very hard to understand as he has a speech disorder.

I never suspected Autism until he was around 2.5 and I started to realise he was a little 'different'. So his diagnosis was actually a big relief because I felt like we'd finally been given an answer which unlocked the doors to better support.

He was diagnosed with Epilepsy at 3 and was also born without fingers on his right hand. So I totally understand your worries. I know a lot of people in the limb difference community who wouldn't change their child for the world but I would give ANYTHING for him not to have his difficulties.

My heart breaks for him x