Autism signs

[Shutupyoutart]

Hi all. So i strongly suspect my ds is autistic. he's been referred to early intervention. So far has seen ot once, and speech and language therapist once this was months ago. We had a phone call from a lady at early intervention a few weeks ago to talk about ds(this was meant to be a home visit but couldn't happen due to covid) the lady i spoke with was lovely she said she would be back in touch with me in a few days but have heard nothing since. I still feel no further along then we were 15 months ago. Meanwhile my son seems to be getting worse. Reasons i think autism. He won't answer his name. Ever. (not a hearing issue as had that checked) he makes very little eye contact a bit more with me but not with anyone else. He can be agressive again mostly with me my arms are bitten, pinched and scratched to bits. He has no interest in his baby sister (1) except to randomly hit her on the head. He walks on his toes, he is extremely hyper and has very short attention span, no awareness of danger or fear. His speech is delayed. Having said all of that he can be very affectionate, he is sociable and loves to play, tickle ect he finds life a big joke and is a barrel of fun. He does interact with others. The ot we saw said he was sensory seeking constantly. I just don't know what to think i keep thinking he is on the spectrum but then someone will say something that makes me doubt myself again and then i think maybe im just a shit mum and have no control over him im sure that's what some of my family members think anyway. Sorry this is so long just wondering if anyone has any thoughts or advice. How did you get a diagnosis? How long did it take? Did people listen to your concerns or fob you off. Sorry again for the essay. Love a very worn out mum.

Ds is 3 sorry meant to add that

We knew our DS3 was autistic when he was 3. He had very delayed speech and language and everyone thought all the issues would go away once his language improved.

He had the attention span of a gnat, couldn't concentrate, made no eye contact, banged his head repeatedly on the floor and played alongside other children rather than with them.

He was and always has been extremely affectionate.

For five years I badgered anybody and everybody who would listen, about our concerns. The GP, the school nurse, the school doctor, teachers, SLT etc.

The Nursery School HT who I had enormous respect for, said she didn't think he was autistic. A psychologist said he definitely wasn't autistic on the basis of one hour's observation. . An experienced teacher at school said there was nothing wrong with him; he was just naughty/awkward/lazy (whichever adjective suited her that day).

He was finally diagnosed with autism when he was nearly 8, and then only after a SLT had been working with him over a long period of time and noticed the the same things that we had been raising concerns about for months.

Hi Ellie thank you for your reply.sounds like you have had a fight on your hands to be taken seriously im glad you got there in the end. they were putting alot of it down to age and taking a wait and see approach esp his pre school teacher who had him for 3 hours a week. very frustrating when you know something is going on and not being heard. How is your son now has he language came along? My ds has only a few words but his non verbal communication isnt too bad he will take my hand and bring me to what he wants ect can nod and say no if he doesn't want something lol.

Are you in the uk op?

Unfortunately you may have to fight to be heard. I certainly had to.

First thing to do is call back the lady from early intervention

Hi dreaming im in Ireland. The waiting lists here seem to be long for everything and just getting people to actually meet him! Its all paperwork and generic forms. Ive enrolled him in a new preschool for sep and the teacher was amazing she picked up on loads in the hour she met him that ive been saying for months. Ds broke my phone which had her number in it. Ive got a new phone kept the same one keep hoping she will ring me back!maybe i can find out from the public health nurse. Thanks for your reply :)

Dreaming how did you go about getting help? How's your little one now?its all really overwhelming isnt it.

Idk if things are different in Ireland (I'm in England) and we didn't realise anything was underlying with him until he was 5. We just accepted how he was and there wasn't any obvious problems. Then it snowballed v v quickly.

He has since been diagnosed with adhd, autism and emotional disregulation when stressed

We had a referral to Cyps via his school. It took months of waiting for appointments. We got a diagnosis around 15 months after initial referral. We weren't happy with diagnosis so went back and was reassessed and given a new diagnosis.

I got in touch with the Director of children's services at the council, the SEND manager, inclusion officer, behavioural therapists, ed psychologists, local mp, the education secretary at the House of Commons, I even sought legal advice (Ds was at risk of being permanently excluded from school, I was told I'd have to home school him as no places were available for him anywhere and he was only offered a part time setting in a school that had said they couldn't meet his needs).

Ihad to chase up Cyps , they were god awful...even when we were in crisis (Ds was self harming, I sent them photos begging for help and got no response) It got to a point my exh went I to Cyps and asked for an emergency appointment. He was told there wasn't any, nothing they could do. He was told we had to wait 12-16 weeks to be seen. Exh said he'd come and sit in the offices with our Ds all day everyday until he was seen (we desperately needed help). We got an appointment 2 days later

What I think completely threw me the most was that even after diagnosis there's no real treatment except for medication if it's deemed necessary. No therapies via nhs, no groups, no behavioural or developmental help. Nothing.

Any support is through charities, local support groups and school.
Overall Ds is much happier and much more settled now. He now attends a specialist school. I feel very strongly that dc and families shouldn't have to fight for what a dc needs. (And if it makes any difference my Ds is the youngest of 3 and I wasn't being pfb about him)

I hope you get the help and support you feel your Ds needs but be prepared that you may have to really make yourself heard. You are your ds's best advocate and his voice.

Thanks so much for your reply dreaming. Sounds like ye have really been through it! Ds is lucky to have you fighting his corner. I think its a similar process here too. My ds seems to have had a bit of a mixed reaction. The salt we saw was very good but she said she doesn't know if its autism or not hes a "difficult child to read" i think its because he was literally climbing and jumping off anything and everything so she couldn't do an act evaluation. Alot of people have suggested adhd(not professionals just well meaning family and friends) but im not convinced. He is incredibly hyper but aside from that i don't know. I think i will try and get back in touch with that woman i spoke with if i can because feel like its all come to a standstill again. Ds is my 3rd baby too ive four. Did you find him dismissive of smaller kids? He treats dd3 like a part of the wall.

We always thought ds was stubborn and fearless as he has two older brothers. And he has never sat still but again we put that down to him just being him. We never thought anything of it because it never caused us any issues

He's very much Jekyll and Hyde and we've learned to read his behaviours/voice/tone and we can now pretty much 'read' if he's having a good day/bad day and can act on it.

He is very very very affectionate towards me, adults he cares for (teachers at school for example) younger dc and really adores animals particularly cats. He's by far the most affectionate out of my 3. But come a day when he's not coping well I can be black and blue from him. Or if someone he loves is getting a hard time from another person (kids in park for example) it doesn't matter to him how old they are or how big they are he will defend the person getting a difficult time. He stood up to a 12 year old once who made a comment to his big brother, Ds was 5 at the time. He's very very protective

What I found heartbreaking (and still find although that behaviour from him really doesn't happen much anymore) is after a violent episode from him he tries to make up for it in his own way. He feels shame and guilt for his behaviour - although I'm convinced he can't control his behaviour at the time. He gets me a glass of milk, or he'll try and share a sandwich of his with me, he'll fetch a cushion to try and make me comfortable, sort of his way of saying sorry. We did have a time when he flat denied anything bad happened after an episode but he's slowly maturing and we're dealing with discussing events.

Shame and guilt are the worst emotions, it must be awful for a young dc to deal with

Oh my god. jekyll and hyde is spot on for my fella aswell! He's so impulsive and will randomly throw a heavy toy at someone or hit them, bite ect. He also loves his family esp my two older girls. Obsessed with animals he isn't a bit afraid of them at all and is very affectionate with them. He doesn't mix well with kids his own age or his baby sister but seems to love older kids. It's so hard to know what's going on in his little mind at times as he doesn't talk much at all. Bless your ds sticking up for his brother and the part about sharing his sandwich with you. He sounds like a really sweet little boy. I think there are alot of misconceptions about autism aswell people have said things to me like he cant be autustic cos he's so smiley or he's too affectionate. Its frustrates me so much.

Oh it's so complex I could write for days the things we've been through and he's only 7. My Ds has a great imagination, can play with peers no problem, can have a decent conversation with him etc but he can't cross a road safe and he has no concept of danger at all.

Ds goes into flight or fight mode when extremely stressed or if something happens he wasn't expecting. He stubbed his toe on the coffee table a few months back, and because he doesn't have the neurological development to deal with it yet, he got this huge Adrenalin rush from stubbing his toe and lashed out at his brother, biting his back.

What has really helped is the Zones of Regulation. Might be worth a read up online, just not sure of your Ds might be a little young. You could easily do a visual chart for him though. Might be worth a look.

Thanks so much dreaming i will defo look those up you've been a great help. It's good to know im not alone in all this. Feel a bit out of my depth at times.

Went to my parents yesterday to celebrate my dads 70th. Took eyes of ds for 2 mins while seeing to the baby and he hit my brothers car with a shovel and damaged it! I felt like absolute shit about it and had a lot of tears. Really struggling at the mo im on anti depressants was hoping to come off them soon but i darent. my arms are black and blue from bites, pinches and thumps. Felt really emotional watching all the other kids on the bouncy castle playing together and ds wouldnt interact with anyone other then my parents dog. :(

That sounds so tough.
Is there any possibility of getting him assessed privately?
I'm in Ireland too and my ds was diagnosed last year when he was seven (his issues weren't as apparent when he was younger, although looking back there were loads of signs).
The waiting lists are so long that we went the private route. It cost 1,300 euro for a full assessment by a multidisciplinary team, and it is accepted by the HSE (not that there are any services available to him!).
We were very lucky that my parents paid the fee, and I know it would simply not be an option for many people.

Thanks a mill for your comment. We've thought about saving to go private act it is a lot but i think that's what may have to end up doing. We're at our wits end i was so upset about my brothers car luckily he was really good about it. It is tough but this new pre school seems fantastic and the lady running it seems like she knows her stuff so I'm hoping things will start to get easier. Thanks again means alot to talk to people who understand how i feel. X

I was fobbed off for years with DD. Her issues were apparently all down to poor parenting. [hmm ]She didn't get diagnosed until she was 15 and we'd moved abroad. The professionals were shocked that she hadn't been formally assessed before as they said it was pretty obvious that she was autistic.

DS was 4 when he was daignosed. He was fast tracked to diagnosis because our health authority have a policy of prioritising children if there's already a diagnosis in the family.

My advice to you would be to trust your instincts. If your gut is telling you that he's autistic then treat him likes he's autistic. Read up on how to handle an autistic child. Learn techniques such as social stories, PECS, and how to use autistic friendly language. When you have the right tools things can get better.

By the way, he may also have ADHD. My DS is about to be assessed for it on top of his autism diagnosis. (Although some professionals are beginning to see ADHD as possibly another facet of autism.)

Thanks so much for your reply mashed. I have thought about adhd my brother is convinced ds has it and in fact brother himself displays lots of signs though never diagnosed. Thank you so much that is very sound advice. I think that's what i will do im learning to trust my gut more after months of doubting myself. Im sorry you were fobbed off so much with your daughter how is she now? Im glad things are different and your son is getting the help he needs. Has anyone heard of these deep pressure vests that you can buy im thinking of trying one for ds and seeing if it helps calm him a little.

Weighted vests and lap belts have been thoroughly researched and are proven to make a different.

My DD is now 26 and is a teacher and is all round bloody awesome. She still has some difficulties and needs a bit more family support than her peers. As a child though she was a bloody nightmare. Even she looks back and is amazed that I didn't kill her, I came so close to breakdown.

DS on the other hand is an angel. We think he has ADHD but it doesn't affect his behaviour as such, more that nothing holds his attention for very long. Take him to a museum and he'll have seen everything and be back out in half an hour. With DD 5 hours later you'd still be in the foyer as she reads every single guide before going in.

*difference

Thanks for that. Lovely to hear how well your daughter is doing now. I feel very uncertain about the future for ds so your story really helps me to think positive. Im going to order one of those weighted vests today and see if it helps. Your museum story made me smile isnt it funny how differently different people present. In the beginning my concerns were dismissed alot he cant have autism because he does x y and z. The more i learn about autism the more I'm realising that it really isnt one size fits all.