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Here are some suggested organisations that offer expert advice on special needs.

What got you through after your child was formally received an ASD diagnosis?
12

rayofglasshalfempty · 11/04/2022 07:50

Hello, we've received a formal diagnosis for our our 3.9 year old about a month ago. They described the support he needs as being 'moderate'.

I just wondered what helped others get through this time, any coping mechanisms?

I have been up and down with it and thought I was ok but today I just feel so incredibly down. I think it's because I'm also sure DC2 is on the spectrum too but nursery are saying it's far too soon to tell at 22 months.

Also, any parents out there with older children - does it get better (not the autism) just the living life with a child/children on the spectrum?

Thank you.

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Greeboisgreat · 11/04/2022 16:57

Yes it does get better. I found the diagnosis process absolutely awful. Once it was done I realised it meant no more appointments. No more doctors or consultants asking the same questions with the same negative responses over and over again. I felt free. My ds didn't change before or after after diagnosis but I was able to shift my focus from the negative to the positive. I can celebrate all his little achievements and I learnt how to just enjoy being with him. As to coping mechanisms sadly I can't help you there. I comfort ate and now weigh a lot more. I cried a lot in the shower too.

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Imitatingdory · 11/04/2022 19:22

Securing all the support you can helps.

Scope offer mentoring to parents of newly diagnosed DC.

Applying for DLA, EHCP if necessary, SALT, OT, finding local support groups etc.

Home Start may be helpful too.

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NinaManiana · 12/04/2022 17:31

I would say the best thing i did after diagnosis was i got a crew. Joined some local facebooks and whatsapps and made friends with other families. Because one of the hardest things with an SEN kid is the isolation. We pool knowledge about the best activities, we do playdates, i drink wine with some of the mums, that was great.

As for whether your child will become easier - the truth is no one knows. Every autistic child is different. In most cases the help you can access is helpful, and you’ll develop strategies to work through the tough stuff.

However my son’s father has held out hope for the past 2 years that ‘i would get easier’ because he read that it would on forums like this and with our son it hasn’t and it’s frustrated the dad even more as he’s felt like ‘if we can just get through this time, things will become easier’ and when they haven’t it’s been a disaster. My own learning from this is to hope for the best but be prepared for a bumpy ride.

That said some of my mates asd kids are easier going than neuro-typical kids as long as they’re in their routine so you never know x

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rayofglasshalfempty · 13/04/2022 20:55

Hey, thanks all for your replies.

I have totally awful moments, usually when out and about and I see kids similar age to my DC who talk and do things in a neurotypical way and I feel like I've failed my children. My kids are wonderful but I feel like I've done something wrong.

That said today has been a bit better as I've been chasing various appointments, and DH has created a handy document to keep track of them all, so feeling proactive in that sense

@NinaManiana I definitely need to build a social network, and I think DH and I feel like we almost need some kind of training and development course to be better parents to our kids.

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Robinni · 13/04/2022 21:36

Knowledge is power. Concentrate on learning as much as you can and implementing strategies and aids that will make life better for your child and the whole family.

I wouldn’t focus on what other people’s children are like, your child is an individual and will have strengths and weaknesses unique to them.

Yes it can be soul crushing to have life turn out slightly differently than planned. But as your child has received a diagnosis so young you have an opportunity to make the best of things with early intervention.

Apply for DLA, check your tax credits or universal credit award entitlement following this and whether you would be entitled to the family fund. That will take care of your child’s support needs for the long term. They will have free access to things like the national trust and free carers tickets for you all those sorts of things. With a diagnosis they will also have much more support at school.

It’s hard but try and focus on the positive with the early diagnosis and opportunity to provide the most supportive environment to give your child a happy life. That is what is getting me through.

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Imitatingdory · 13/04/2022 21:39

Does your area run the EarlyBird course or equivalent?

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Rorlaa · 25/04/2022 07:07

Hi there, I always feel on boards like this like beeing the only one to totally collapse after faceing the diagnosis. For me it was the moment when my last hope was taken away.
My second was born around that time and in the past year it was getting clear she has the same pattern of delays and red flags so it made it even harder for me to find a way to cope with the whole situation.

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confusedofengland · 25/04/2022 14:51

Joining this thread, if it's ok.

DC2, who has just turned 11, received a diagnosis today. I feel completely bamboozled. It was totally expected. He's been to various appointments since he was 2 & has had a full EHCP at school from the start. So this is just a formality, really. The medical professionals said that we won't be offered any help as there is nothing they can do & school are doing what they need to already.

I feel heartbroken, then I feel stupid for feeling heartbroken. They described him as finding the whole assessment very difficult, being mechanical & unresponsive. He can be like that. But he can also be the most charming & chattiest boy there is. The paediatrician has seen him like that & when the appointment overran we joked he was probably chatting too much & charming them.

Anyway, I'm waffling, sorry. Sending all the best to all of you on here 💐

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Aswad · 10/05/2022 03:44

I don’t think I’ve fully accepted my DD diagnosis and I honestly wish this was a dream I’d wake up from. Like you, I can’t help but feel sad when I see mothers and daughters having simple conversations or walking side by side (mine is non verbal and will run off given the slightest chance)
i really try to be positive but some days are very difficult

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Robinni · 10/05/2022 09:55

@aswad a friend of ours has an autistic daughter - non verbal in a special school until age nine. Then she improved so much, with the support in school and at home, she became verbal and is now mainstream.

Focus on your daughter, try and accept her as she is. She has potential just as any other child. You might not have what you perceive to be typical experiences - but remember every child NT or ND has their challenges. You’re just viewing it that everyone else has it better/easier because you’re finding it difficult to adjust to reality vs expectations.

I am in the process of accepting I have autism myself, following DS diagnosis. My relationship with my mother was complex, I could never check all her tick boxes for what way I should be. We missed out on a lot of good experiences really because we didn’t accept each other’s limitations/needs. I regret that now.

Your daughter is and will be wonderful just as she is. I read this book and found it helpful.

Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age

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Aswad · 10/05/2022 12:11

@Robinni she’s loved and I hope she knows that she’s loved. She’s my shadow and so attached to me. I’m forever positive around her and tell her I love her and hug her constantly. I keep all of these feelings and thoughts inside and I’d like to think you’d never know. The acceptance part is something for me to work on and not reflective of my daughter at all.
I hear of more women being diagnosed in later life and that must be so hard.
I hope your relationship with your mother gets better ❤️

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Robinni · 10/05/2022 12:24

@Aswad just trying to show things can and will improve and offer support. Mum is gone now sadly. I was always super sensitive to peoples feelings so picked up on the general dissatisfaction/frustration, I don't think it was personally aimed at me, but she clearly wasn't coping. Surround yourself with support and make sure you get time for you too. I found it very overwhelming when my son was diagnosed and his behaviours were more difficult. It is better now he is older and we have support structures in place, I hope it is the same for you and you are able to come to terms with things more.

As for my late diagnosis, a lot of wasted time and unnecessary difficulty. However, I am better equipped and motivated to fight for my son so I'm grateful he won't have the same experiences.

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