Any one received a recently received an ASD diagnosis for their child?

[MMXIXx2NL]

Just wondering how you are coping/ dealing with it? In terms of understanding and accepting the diagnosis and also managing the day to day life of having a newly diagnosed child with a disability or multiple disabilities ?

Sorry was meant to say * any one recently received a diagnosis of ASD for their child?

My DD was diagnosed in June. Even though I already "knew" I really struggled with it for a few weeks. I wasn't expecting to feel like that!

But things have been so much better since then. She didn't have much support in school previously so it's made a big difference.

Has your child recently been diagnosed OP?

Not recently diagnosed, was 2 years ago. But remember actually just feeling a bit relieved that the waiting and wondering was over and we could try and just get on with the rest of our lives. I think by the time diagnosis finally came, DH and I were both 95% sure DS was ASD anyway.

The negative feelings were mostly anger and frustration at the completely inadequate offer from our local NHS commissioning group. It was a case of, 'yep he's autistic and you're pretty much on your own from this point.' Nursery, school and charities have been better. But state offering has been shite. We pay privately for services which should be open to us on the NHS but aren't - we claim DLA and use the DLA money to pay for the services, so it feels a bit ridiculous and 'robbing Peter to pay Paul' but ho-hum.

At the end of the day, your child is still your child. My love for Ds is completely unaffected by his diagnosis - if anything, knowing what he has to manage on a daily basis just makes me more in awe of him. He's a great kid and I love being his Mummy.

One this year, one 7 years ago.

It gets worse every day.

There is absolutely nothing for us/them.

My son was diagnosed in April. Eventhoigh I had an inkling that some of his behaviours could be seen as autistic, when he was actually diagnosed I felt devastated. I felt very low and anxious for a number of months and I have have times now when I felt angry, upset and worried. But those days are fewer. I have decided to Channel my energies into helping him before he starts school but to also try to take a mental break away from autism from time to time and not let it be the only thing we focus on or what defines him

Not recently but I remember it well, and being surprised how emotional I was about it (even though we had already been told that was the most likely outcome).

If you are going through this and need a bit of a boost/support, the "Nurturing Neurodiversity" Facebook group has lots of other parents going through the diagnosis stage (many still waiting but also many recently diagnosed), mainly in the UK (but also from around the world). If you look up "Nurturing Neurodiversity" on YouTube first you can look at a few of Faye's videos, which may be useful in themselves and will give you an idea of whether the FB group will be useful to you, as the tone is very similar. It's a very positive space.

Ds age 15 was diagnosed in September. We are not coping well and neither is he. Ds has significant mental health issues because because of his late diagnosis and lack of support. We are trying to get him help with that at the moment and are struggling to get him the support he needs.

Im getting a diagnosis next tuesday for my nearly 3 year old daughter, i know she has autism for last year and i know they will diagnosis but im feeling so sad about it

We recieved our diagnosis a couple of weeks ago. I'm relieved that his difficulties are recognised. He's in junior school and functions through a school day then crashes at home after. My concern is getting through the secondary years. He is very bright at science/ maths so has good potential in adult life.

I'm not sure how supportive school will be. He's in a good class and has always had positive relationships with his teachers, but the SENCO is hard work for getting anything beyond the class teacher's normal range of interventions. My priority is doing what I can to get him into a supportive secondary school with appropriate strategies.

I have been quite emotional, but that happens at this time of year anyway with colds, Christmas and his birthday.

My son was diagnosed in August and I really wasn't expecting it - I was expecting him to be discharged!

I remember that awful sad feeling but it does fade (well it did for me). Try to remember that your child is the same child they were the day before the diagnosis - the diagnosis just entitles them to a lot more help and support.

I threw myself into researching after his diagnosis, and if you were after book recommendations I would suggest Uniquely Human as a very positive and practical book to help a parent understand why their autistic child is doing whatever they're doing.

In the coming weeks you might also want to look into whether your child might be eligible for DLA. It's not something that needs to be done immediately, but that extra money to support DS has made a big difference for our family.

Good luck with it all!

My son 7 was diagnosed earlier this year. At first I felt a sort of grief and huge fears for his future. The diagnosis coincided with him going through a particularly difficult patch and I wondered if it was just going to keep getting worse. But it didn't. The start of the new school year was difficult, but now he has settled and is better than he has been in ages.

Things that have helped us are trying to give him clearer structure for the day; reduce overall stress e.g. changing my work pattern to reduce after-school club; and also using zones of regulation. Zones of regulation is a really simple idea, but it seems to be making him much more aware of his feelings and how they affect his behaviour.

I'd be interested to know if anyone else has had positive support from their school, and what the school have done, as mine have done nothing.

My DD received a diagnosis a month ago. We got the diagnosis privately, which was a relief in a way as at least I know I’m not barking up the wrong tree. We have just started testing through the NHS. I have no idea what support (if any) she’ll get/needs.

She seems to do really well at school, then flips out at home. She is in the last year of primary, where she helps out with the younger ones and has lots of responsibilities. I’m worried she’ll get ‘lost’ at secondary and be on her own. She’s never been good at making friends and mean girls are always drawn to her.

Hot Ds's school have been useless. They have put him on the SEN register but would not do it until they had a copy of the letter confirming the diagnosis.

Ds's assessment came with some generic recommendations that the school have actioned but they don't work and school are not prepared to look into doing anything else. Ds's report says he has significant difficulties with social communication and interaction and would benefit from support with this, there has been none so far. They have just done a referral to help him with his communication problems and also try and help him with his mental health difficulties. They have now told us that they won't pay for this so if we will have to pay if we want Ds to get the support he needs. They are utterly useless and their lack of support has caused more stress in what is an already difficult situation.

@Punxsutawny I am sorry to hear that. Have you had any contact with SENDIASS (I'm not sure if it is called that in all areas, but it's the local authority support service for parents). I nearly cried when I read their school refusal guide, it described so much about my DS.

Hot we have had some contact with Sendiass. They have not been particularly helpful if I'm honest. It is tough especially if your child does not have an EHCP because there doesn't seem to be any requirement for schools to offer help.

I hope you manage to get the support your Ds needs. It certainly feels like a battle at times.

We are waiting for our next appointment when I believe our 6yr old will be diagnosed. Last appointment was in June when we were told he is on the spectrum but the consultant wanted him to be assessed by the speech and language therapist before giving his official diagnosis. Speech and language turned down the referral saying he did not meet the requirements for their services. So we are in some kind of limbo right now.

Infant school staff have been great, but he’ll be starting Junior school in September and I don’t know what to expect in terms of support.

DS who is 5 has finally had his official diagnosis just before Christmas. I first flagged it up with his preschool 2 years ago, so it was really just a relief to finally have the dx and now push on with getting an EHCP.
It's been quite obvious to me that he has ASD, as I'm autistic myself, so there isn't any disappointment or needing to adjust, I always knew he was too much like me to be neurotypical
He was diagnosed at first assessment- the paediatrician sent some social communication questionnaires to school "to tie it up" before giving us the official diagnosis, but said she was very sure and we wouldn't need to wait for the follow-up appointment to get a dx.
I haven't told DS as I'm not sure he'd understand... how old were your DC when you told them, or had an understanding what their condition meant?