What's the point in ASD diagnosis?

[Swalewhale]

I have a strong suspicion DD aged 7 is on the spectrum.
After googling, I see the typical route is to go the GP and then go on the waiting list for assessment.
My question is, if you have gone through this process, and they eventually confirm it, then what? How will this diagnosis benefit our lives? It's not something they give you medication for, you can't fix it so does it change anything?

I want to be talked into getting her diagnosis but I'm not sure why. She is quite sensitive so I don't want to put her through unnecessary assessments or to make her feel like she's different.

Support (for you and the child), understanding (of self and by others), reasonable adjustments (at school and later in workplace).

We already had all school support without diagnosis the only help my dd got
was in school

Thanks so much for all your replies, I have read every one and even cried reading some of these stories. I have decided I will start the ball rolling.

In response to the question about her school, they are rubbish. They have SEN support workers but they would laugh me out the school. The kids that they deal with have extreme learning and behavioural problems. It's not the same with DD. Im loathe to say how she displays in case people think I'm just trying to label her.

There's been a recent 'fad' on TikTok of people claiming they have ADHD if they do xyz (everyday normal behaviours!).
I know what Asperger's looks like and it's not that. I'm pretty sure she's on the spectrum but not as far as others.
I just don't want people to think I'm trying to label her to get benefits or join the latest fad.
I've got nothing to lose so I'll push for it, for her sake.

I am 100% sure I am autistic but no diagnosis; I’m sure this would be different if I was male. If I had known as a child it could have had a profound impact on the support I have received in different areas and stages of my life, and most importantly my understanding of myself. Plus I would be able to access support/adjustments at work without discrimination. Your child may not require support now but if they do in the future, a diagnosis will be very useful indeed.

My husband was diagnosed as an adult. Not getting a diagnosis as a child has completely ruined his life in terms of family acceptance - now no one will believe the diagnosis as that means accepting they missed it as a child. So his family have called him a liar and have disowned him.

The lady from SEND was very experienced

Can I ask who you mean here as SEND isn’t a department/company or place. Do you mean a specialist from the Local Authority?

I really need a lot of support and it’s become obvious as an adult. I was only adult diagnosed but I see some of the resources now available and think they might have really helped. It got harder and harder to make friends and I don’t have them now. You might think this would have been obvious but it wasn’t at all.

DS was diagnosed when he was nine and it’s completely changed our household.

When we first told him, he had no idea what it meant so we bought him a book to help him understand. That week he read it cover to cover and every night he’d interrupt his reading to come down and tell his latest revelation. “Mummy, you remember that time I did xxx? Well it’s because I’m autistic!” You could see the relief in his face.

It will help her to understand herself and as above unlock help.
If needed she can go to a specialist school if she has an Ehcp which she is more likely to get with a diagnosis .

Dd has just started uni and has extra support and doesn't Have to do presentations etc so it's helped her ..

Tbh we just paid the £2700 to get her diagnosis at she was 16 when it was flagged up so no chance of getting it done on the nhs!

bookinghawk.com/event/neurodiversity-ireland/811/neurodiverse-children-in-schools-reasonable-adjustments-supports-and-masking/18982

There's an online webinar next week for parents of neurodiverse children discussing masking & support.

Also, check out the ASD Girls Network for further support and information.

No they don't, a diagnosis doesn't bring any extra funding to a school.

If it is suspected, I would recommend trying to get a diagnosis before moving to secondary. Many pupils who were fine in a small, cosy primary start to struggle when they get to secondary with more complex social interactions and expectations, and having the diagnosis already in place means support can be targeted in the right way (rather than a crisis forcing a diagnosis).

The diagnosis made a massive difference to the support my son receives at school. Instead of being written off as “naughty” (thanks Reception teacher who has now left the profession….!) he is absolutely flourishing. He also receives DLA which helps us to pay for anything we think he needs. Without the diagnosis we would all still be floundering.

Looking ahead to university it makes accessing Disabled Students Allowance easier (money for specifically recommended things).

I've found it really helpful to us as parents. We couldn't understand why we were finding certain things so much more problematic than everyone else.

Plus it has meant school has become much more reasonable about homework and that used to cause massive issues.

Also we got melatonin for sleep issues and that has changed our lives.

Don't know what this "support" is though. Apart from a kind GP, we've had to pay for every single bit.

An official diagnosis helped both my dyslexic DSS and my DH. More time in exams, special computer programs at college, less of the 'try a bit harder' criticism.

Professionals understand masking.
A diagnosis gives her access to support at school, university (if she chooses to go) and work. It can help her to understand herself when she’s older.

I would recommend it. But I disagree with most of the above. I don't believe it opens that many doors, or support. Or rather you should get that support based on need, rather than diagnosis. Plus you don't need a diagnosis to read up on it, read about advice that has helped others.

For DS1, the diagnosis in writing helped school obtain funding for a full time 1:1 TA which kept him in mainstream school.

As an adult, it means his employer cannot discriminate against him for anything relating to ASD.

It unlock support, it unlocks funding for the school to provide that support. If you suspect it, then absolutely go for it. It's important too that a child understands their diagnosis. ASD/ADHD parent here.

For us it didn’t unlock support but it did get rid of the numpties who put DS’s problems down to “bad parenting,” “not trying hard enough” or even simply me making it up.

Well it's a huge spectrum,for my son who was diagnosed a t three he got everything in place for starting school ,statement ( as it was then ) place at a SEN school.various involvement from various professionals ,my friend was diagnosed at 49 it helps her understand herself aamongst other things ,the point of a diagnosis will be different for everyone

This is untrue. A diagnosis unlocks no funding for the school.

Pupil Premium funding is something entirely unconnected. It’s linked to low income/parents receiving certain benefits or a few other reasons-service families/adoption/residency orders etc

So many good reasons to have the assessment. My daughter is 16 and was diagnosed at 14. Benefits:
Most powerfully, she will understand why she is the way she is and that it’s ok to be that way.
Diagnsosis unlocks support at school and university e.g. exam access arrangements.
There is a lot of bullying of children who are autistic but just thought to be annoying. When people understand there is a reason behind a difference, they are more likely to be kind.
Diagnostic report will have recommendations which schools will (hopefully) act on.
when your daughter gets older, she may start to suffer from issues that are often caused by/comorbid with autism. In my daughter’s case it manifests in anorexia, depression and panic attacks. It’s important to get the right support in place so they are not stranded and alone with a tumult of powerful feelings and stress.

cons:
With a some exceptions, you can’t go into the armed forces with ASD.
if you be managed to get CAMHS support, many CAMHS areas will drop the child once they have the diagnosis.

another reason, girls often are diagnosed later or not all and especially at your dd’s age and teens years start to struggle more. Our GP would not refer said school had to. We ended up going private as the wait for assessments is so long. If she has a diagnosis then it’s a starting point for getting support if she needs it.

A friend of mine is a clinical psychologist and a significant amount of her clients had undiagnosed ASD and struggled to fit in as teens and now have psychological issue as a result. But maybe it's too soon?
My daughter had obvious ADHD from a very young age, but didn't really need it diagnosed until she was a bit older and then it gave her a better understanding of who she was as a person.