Worried about autism no one to talk too

[fate89]

Hi,

I have been feeling down and upset in the last few months. I have no one to talk to and feel like I’m spiralling I can’t help but worry about my son. He is 16 months due to be 17 at the end of the month.

My in laws pointed out he may have autism. He doesn’t point, shake his head for yes and doesn’t wave. He will clap and high 5. He tends to hand lead me to want he wants and will look at what he wants, hoping I understand. He tends to shake objects in his hand( paper, cars, anything really) to see it it makes a noise. He doesn’t imitate unless he feels like it. He doesn’t look at where I’m pointing, I don’t think he understands. He understand if I tell him to put something in the bin, understand if I say here or bye bye. He responds to his name occasionally if he isn’t too busy playing. He will bring me books to read or show him his toys. I took him to HV and she wasn’t worried. Said he makes eye contact and doesn’t seem like he’s in his own world. She said he has speech delay. I have done the M chat and he has failed, he scored 5 failed relating to pointing. I have done the ages and stages and he failed in the communication. He doesn’t have aversion to food or noise. He is a really good sleeper.

He will be starting day care on Monday as I work from home and I’m struggling to maintain both. He loves going to play groups so I think he will enjoy day care. I don’t have anyone to talk to about this. Anyone else child was the same? I’m worried I want to get him the right help. I cry every night and I can’t help worry about his future.

thanks

Hi fate89 I'm so sorry you're feeling this way! I totally relate though, I literally put up a post 2 nights ago about my 2.4 year old boy and unsure whether he is autistic or not. The worrying and stress of it is crippling and probably like myself it's not the diagnosis in itself but you just want to be able to help your son and you're scared of what life will be like for him, because I'm terrified.

Your son is still very young by all accounts. I think at that age my son would have failed the mchat too. You have made some points that may be indicators of autism but they are also typical toddler behaviours, which is the stressful part I guess because we just don't know. You may see a big difference in him when he goes to nursery and even over the next few months in general as he's getting older.

As people pointed out to me and ritely so, he's only little, enjoy him, we don't want to regret being so worried about everything that we missed out on the fun 💙

Hi Buttercup1999, thank you so much for the response. That’s exactly what it is, I’m so scared. It’s the unknown and waiting to see if he does have it or not.

I am watching his every move and overanalysing everything he does , then straight on to google I go. It’s awful and it’s bringing me so down.

I hope nursery does help. Hope you and your little one are doing well 💖

I read your reply there and literally thought it was a response I had written to someone! If you could only see my Google search box 😪it brings you so down.
All we can do is support them as best we can as we would do whether they were waiting diagnosis or not 💙

Awww OP. I don’t have parental experience of ASD but I remember being really paranoid about it when DD was approaching 1. She was late with the ‘ASD’ milestones - she clapped at about 13 months but didn’t point/wave until closer to 16m if I remember correctly. I was panicking as there were so many photos/videos of the other babies in our NCT group chat waving and pointing before they turned 1.

Anyway she’s 3.5 now and very NT, sociable and happy - so some kids are just late bloomers. Hopefully same for your little boy xx

Yes, that’s all we can do. I’m so impatient. I hope I can really get it together and enjoy the time with him 💖

Thank you so much for replying. I hope so. I just can’t stop blaming myself most of the time xx

I am a single dad, who is autistic and has several family whom are also autistic or on the spectrum.

Hopefully these facts will help with your concerns.

Current understanding

1 - General public view autism as a disability. NTs view it as a handicap. It is not. The term NT stands for Neural Typical. You don't think of someone who is double jointed as disabled, not would you think of someone whom is 7ft tall as disabled. They are simply different.

2 - To reinforce point 1, I earn high 6 figure salary. I am productive. I may not understand sarcasm and pick up on when people are being serious or making a joke half the time. However I can sort huge amounts of information out. My cousin at 4 could do hard multiplication in his head. We see the world differently and process things differently. Your child's brain simply will have larger areas which means they can hear/touch/see/smell more and that information will take time to process.

3 - Your child is extremely young, your not going to be able to do an assessment that will really tell you anything until they are 5-7 years of age and even then thier brains can be rewired in different ways so autism is less pronounced.

Future possibility

I hope you can see your child's possible autism as a gift. Like a kid who has strong mussels or harder bone. With the right encouragement they can be the next prince of math, or the next Albert Einstein or Tim Burton. The ability to see the world in a different way is a gift.

Advise

The only three thing you can do to make sure it's not a problem in your life and there's is the following.

1 love them, this is crucial for an autistic child as they can pick up basic emotions mainly. Love, anger will shape how they react to uncomfortable situations.
2 have patience, when they are overwhelmed by Thier surroundings and show signs of distress. It's easy to be upset yourself. Have patience and slowing things down like turning off loud music and sit there smiling is hard when a child is crying. However they will mirror you.
3 let go of the idea that Autism is a problem. It's natural to worry as a parent. However I am pretty sure if Albert Einsteins mother new how her child would be remembered she would not be so worried. I am also pretty sure Usan bolts mother did not lose sleep over his size which resulted in him being a world class athlete.

Please find a video which I am told helped them understand me more.

vm.tiktok.com/ZMY1K1tsS/

Your kid simply think differently in an extreme form.

I could have written your OP 18 months ago.

When DS1 was 15/16 months I drove myself (quite literally) crazy. He was clearly behind his peers with development when he was with other children - no words, not walking, had an obsession with spinning wheels, hand flapping when excited and wasn't pointing. I used to watch him like a hawk and overanalyse EVERYTHING, which meant that I didn't enjoy him at all for a long while. In the end the doctors prescribed me medication to try and calm me down a bit.

Fast forward to today and he's just turned 3. He pretty much stood up and started running aged 22 months and his speech exploded around the same time. He is now talking in fully formed sentences and understands everything. He still has quirks, like the hand flapping and an obsession with car makes and models, but he's caught up with his peers and there are no concerns from any medical professionals.

I know it's hard, but take some comfort in what your HV has said. If you need more reassurance, push for a referral to the paediatrician so that he can be assessed properly. Speak to your GP too and explain your anxieties and they may be able to give you something short term to take the edge off - this worked for me tremendously.