ASC diagnosis - finding a tribe

[nightlighton]

I’m looking for parents who are in similar circumstances who want to connect, share stories and support each other. I read the other group posts but I thought I’d see if there are any takers who are also at the start of their ‘journey’.

Btw - I’m learning so if I use the ‘wrong’ language please bear with, this is all new to me and I’m certainly not meaning to offend.

About me/ my child - my 4yo recently received their ASC diagnosis. They’re starting mainstream school in September.
I’m struggling to find the joy in everyday life, I find it so difficult and have spent everyday in tears recently. I know this will pass but at the moment, I’m in the thick of it and struggling with acceptance.
I have a younger child who is very demanding and between parenting, attempting to work and the diagnosis (and all that it brings).. it’s all too much and I’m struggling to function. Can anyone relate?

Hi 👋 All three of my girls recently received diagnosis of Autism and one of them ADHD too. I spend most days alternating between crying, despair and sadness at this.

Its a lot to process, how are you doing?

hey @Skintdancemum it is a lot to process isnt it. When the few friends that knew about the diagnosis ask how I’m feeling I’m just giving them the answer they want, or I think they want. I don’t think I could unleash my true thoughts.

How old are your girls? Have you been able to talk to anyone?

Hi both of mine are autistic. I struggled so much when my son was fist diagnosed at 3, looking back (it's been 7 years) it does get easier! I was on an emotional rollercoaster, I was very overwhelmed at first. September is daunting my dd is in year 1 so that feels like yesterday.

We sound in similar situations, I have a DD3 who isn’t formally diagnosed yet but it had become obvious she is autistic the older she has gotten. I also have a younger child too who I monitor incessantly for signs that she is also autistic (my eldest didn’t start to show any signs until 18mo-2yrs). I cry most days and feel completely overwhelmed and drained by being the emotional anchor for my children with my DD3 needing me a LOT to regulate, etc - I know that’s what I signed up for as a parent and I do it willingly everyday but by the end of each day I have nothing left.
Is your child verbal? What are their current struggles?
It’s really hard but I do believe it will get easier or that’s what I have to tell myself! ❤️

@TheGladMoose positive to hear things do get easier x

@Lordfingal (fellow duggee fans I presume?) yes, both verbal. My 4yo has a slight speech delay - it's there, just a bit behind. We've just been discharged from s&l.

I'm doing the same, constantly looking at my younger child. If there is something there I think it would be adhd not asc.

It's so hard, sorry you are struggling too, do you have anyone to talk to? Have you got any referrals in to start the diagnosis process?

Hi hun , my son has ACC, I feel like he has symptoms of Adhd and Autism both ,but his paedtrician said that its his own condition which causes the symptoms, its not Autism or Adhd. I totally understand what u are going through, I remember when I was 20 weeks pregnant and and they saw it on the scan and then it was Scans and appointment in the rare neurological illness department. They had it confirmed with mris before and after birth. I was in denial of the diagnosis, I went through traumatic postnatal depression, more towards psychosis , my son has a lot of needs , he's calmed down a lot I have learnt to deal with it all but the first 4 years were horrible. I didn't go anywhere, I had to keep him restrained in pushchair when going out he used to run away he still finds transitions hard from one place to another . People don't understand meltdowns , they stare at you thinking your a bad parent . I have a 9 Yr old he's always been a complete angel. Sorry I am venting but it feels good to let it out . I hope you have support because it makes all the difference. I was proud I denied help which made it worse . Make sure you get all the help you need and also make sure even if it's an half an hour u get to urself when your children are sleeping. Xx

He's a beautiful, loving little boy now , he makes my day by saying the sweetest things . He wasn't toilet trained when he started school I had to go and clean him in school. I used to walk it there it's half an hour away from my house. He wasn't talking he had speech and language therapy every Friday. Now it's a lot better , he talks and plays and will sometimes do a number 2 in the toilet. He's going to be 5 now .

Hello!
I am further down the line with a top end of KS2 child. Ages 3-6 were the hardest. At 9 he has matured, I have learnt not to compare or take criticism from those who do not understand. We have daily joy. We managed to battle through the EHCP process and get him in to the right setting which has made all the difference.
You will feel better, but this in between stage where you have a diagnosis but all you can see in the ‘normal’ path and how hard it seems, is lonely. Soon you will see another path and that path is full of people who understand and whose struggles have made them compassionate and generous. You will see your child can walk down this path and this path is joyful. The other path is for other people and it no longer troubles you what they do. But the in between is the hard rough ground.

I totally agree. I constantly compared to the 'normal'. We are on the right path now its been a bit of a journey there will always be struggles. Linking with others who have shared experiences will give you strength.

@nightlighton Yes, big Hey Duggee fans - I think that’s where my DD has got a lot of her speech, she has delayed echolalia so is constantly scripting from her fave tv shows and books, but can make all her needs known so every so often will request something in amongst the scripts (“go outside”, “mummy help me”, “more blueberries”, etc). So I’m grateful that I get to hear her voice when I know many parents don’t. She is in her own world most of the time and acts like nobody else exists, including her baby sister. That’s what I find hardest, the lack of engagement.
Does your little one engage with you? That’s amazing that their speech has caught up ❤️

We’re on waitlist now for assessment, which is 2-3 years in our area. I’m not fussed about the assessment though as I know she’s autistic and, from what I’ve heard, getting a diagnosis doesn’t mean you then gain access to lots of support!
I have supportive friends & family but no one really understands what you’re going through unless they have an autistic child themselves…
I’m actually in the process of looking into counselling, is that something you would consider?