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Newly Diagnosed with Autism

connoro007

Hello, I haven’t been on here in a while but yesterday I got formally diagnosed with autism. I have co-morbid ADHD/ASD/GAD. Did anyone else sort of just know that they were autistic beforehand? Because I could sort of tell if that makes sense.
Just posting to try and meet others with autism/adhd and hear stories of how you get through life and handle social situations!
Thank you

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Chloe_Alumni

Hi @connoro007 and thank you for sharing this with us all. How are you feeling about being diagnosed?

Here is the National Autism Society which is a charity which may be able to provide more information about your diagnosis.

They also have a helpline which can be contacted on the number below:

By phone

Call us on 0808 800 4104

Monday to Thursday 10am-4pm and Friday 9am-3pm

Here is some information about receiving a diagnosis as an adult.

Please do let us know if we can do anything else, and I hope other members will share their stories with you.

OverlyAnxious

connoro007 said:

Hello, I haven’t been on here in a while but yesterday I got formally diagnosed with autism. I have co-morbid ADHD/ASD/GAD. Did anyone else sort of just know that they were autistic beforehand? Because I could sort of tell if that makes sense.
Just posting to try and meet others with autism/adhd and hear stories of how you get through life and handle social situations!
Thank you

Hi Connor,

Can I ask how you got the formal diagnosis? Were you referred to a specialist by the GP? How long was the waiting list? Was it local or did you have to travel somewhere?

I'm most likely on the spectrum myself but when I asked about a formal diagnosis I was just fobbed off by the GP tbh.

connoro007

Tbh it’s been long and daunting process, got messed around by mental health teams and it’s been rubbish! But glad I finally know why I’m the way I am! My GP signposted me to the autism directory, I then had also had an assessment with gwent integrated autism service and got accepted for a thorough examination. Moved to Cardiff so was then under the Cardiff and Vale Integrated Autism Service. Due to my struggles they made me a priority and said if there’s any cancellations I’ll be one of the first to attend. Called me last week to see if I could go for an assessment on 18/09/19 and got diagnosed with ASD and they said it runs comorbidly with my ADHD. Was quite relieved to find out tbh as I’ve struggled with mental health and not knowing why I struggle to form relationships and how I’m so able when it comes to science but in other areas I can’t function as someone neurotypical. Feels like a huge weight had been lifted.

Chloe_Alumni

Hi @connoro007, I'm glad to hear it's been like a big weight has been lifted, I bet it has answered a lot of unanswered questions!

I'm sorry wasn't the smoothest process, but it's reassuring to hear things were quick when you were recognised as a priority.

connoro007

Thank you Chloe! Had a phone call today about a post diagnostic follow up. Really looking forward to meeting others like myself, the only people I know on the spectrum have been people I have cared for, so obviously there’s just a professional relationship and it wouldn’t be fair to confine in them! If anyone could recommend any groups or anything I would appreciate it

poppy123456

Hi,

My daughter was diagnosed in 2018, she was 17. I fought for 14 years for her because they constantly told me i was be over protective. The older she got the more noticeable it became. We already had a diagnosis of a learning disability.

She started a special needs college in 2017 and they referred her to a local ASD specialist with the CLDT and because of her age at the time she was made a priority but we still had to wait almost 5 months for the process to start. When it did start it wasn't just a simple assessment for her, there were many different appointments for myself and my daughter. I had to answer questions as far back as when she was a baby, not easy because it was a long time ago. They visited her college to watch her in 3 different lessons, they also secretly watched her at break times. Then she had 2 appointments where various questions were asked. All of this took 3 months. We then had a ASD specialist visit our home where we were told that she does have ASD.

It was no surprise, i knew for years but was always told "she's just shy" despite not being able to speak a word until she was 5, couldn't read, write or count to 10 until she was 7. Couldn't even spell her own name.

People used to say to me "what difference will a diagnosis make" well it makes a huge difference because we finally know what's wrong, why she finds everyday life so difficult. Why she needs so much support to get through each day.

She has social anxiety too and doesn't deal with social situations at all and needs support everytime she goes out. She's 18 now and has never been out alone in her life. She doesn't speak to people she doesn't know but will answer you if you ask her something but her tone of voice is very quiet and she looks down at the floor when she answers you but it will mostly be a one word answer.

I live alone with her and conversation is difficult, even for me. I talk to her about everyday things but she never answers me but if i talked to her about something she's interested in then she has no problems answering and even telling you everything she knows about the interest. She has a personal assistant for 8 hours per week paid for by direct payments. The PA supports her to go out and do the things she likes to do.

Her learning disability makes things even more difficult for her because she doesn't understand money and she can't tell the time. She's just started a new school at an academy for special needs students post 16, they only take students with an EHCP and she loves it, there's only 2 other students in her class.

She has 1 more assessment in the next few weeks. They have decided to assess her mental capacity, how long this process will take, i have no idea.

connoro007

Poppy thanks for that post, your daughter is very lucky to have a mother like you.
Just from reading your post I can tell how many hurdles you and your daughter may have faced and it’s inspiring. I’m so happy for the pair of you that she finally has her diagnosis and hopefully now you will both receive the support and help you both deserve!
More often than not in this world, people with disabilities are overlooked and have to fight so hard to get support which can be life changing and enable people to live the best possible life - it shouldn’t have to be that way.
I don’t know if this may benefit your daughter or not, but a lot of clients that couldn’t understand the concept of time have been able to learn to compensate with the use of egg timers to ease the transition of one activity to the other. Not sure if this will help but maybe it will be worth a look.
There are so many people with autism and similar neurological conditions that seem to slip through the net and end up struggling later in life but I’d love to believe that one day the general public will be more aware and helpful in ensuring anyone with a disability is recognised and treated the same! We just have to keep fighting for this and I can tell you are a fighter

Does your daughter have a lot of peer support?
I know social interaction can be difficult, but if she is interested I know the autism directory and similar organisations run workshops that build on strengths and can try to help ease social anxiety. Hopefully this helps! Wish you both the best and if there’s anything I can try and do to help please let me know.

poppy123456

@connoro007 thank you for that! I wasn't prepared to sit back and let them walk all over me. It was worth the fight to finally get those answers.

She receives a lot of support and our local council have been amazing. Taxi's to and from college paid for in full by the local council, PA support and extra money in her budget for respite, one to one support at college. Her PA is amazing and has supported her for 15 months, we love her! My daughter has gone from totally refusing support and staying in her room when she came and refusing to do anything with her. Fast forward 15 months and she loves her, she's made a huge difference to her life (mine too) we are moving house soon and her PA has agreed to travel the extra distance so she can continue to support her. She definitely become part of the family.

However, there's been no peer support as in groups etc because she's refused anything she's been offered and it's been offered to her quite often. It's because she doesn't interact with others and the thought of going somewhere like this terrifies her. She has had CBT with a councilor weekly for 10 weeks but it didn't help with her anxiety at all. She tells me she deals with it in her own way.

The egg timer advice is interesting, i've never heard of that before, i'll definitely be looking into that.

I hope you will also receive the support you need in the future now that you finally have that diagnosis because having that diagnosis, definitely makes a huge difference.

Best wishes and take care.

Alex000

Hi, I’ve been scrolling through a few threads and joined the community today. I have a 10 year old who is undiagnosed with what we are 99% certain to be adhd and Aspergers, we are waiting for an assessment which is booked for October privately, the gp’s have made me feel so small and absolutely awful throughout the years trying to get help, so we decided go private.

i just wanted to say that I saw your advise about the egg timer and through all research I’ve done, I’ve never come across this one and I just think it’s so brilliant! My son really struggles with being organised, unable to understand time and I think this can be so helpful especially when getting ready for school etc. Also it might help him with learning the actual time which we are currently working on. So thank you for the advise.
I’m glad to see you have finally received support.

all the best.

Adrian_Scope

Really glad to read how much of a relief this seems to you @connoro007. Please keep us up-to-date on how you get on. Have you looked at the National Autistic Society's local branches?