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.

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

This is no longer true. The Second Sealord has ASD and is actively encouraging neurodiversity within the Royal Navy.
The ‘no asd’ thing is from before Aspergers was included as a type of ASD

It's not really about what support there.is for autism specifically because the spectrum is so wide and varied ,a diagnosis might help in defining what support your child needs in school for example .

Op there is nothing to fix, but please apply for an assessment asap. You have no idea how hard it can be for children with ASD when they get older and move to secondary school. Depending on her current school/future schools she may get zero help in the future and during the transition to secondary. I'd of given anything to get help earlier- your daughter is very lucky to have you suspect it at 7. All the best xx

You will not be able to get support from places like camhs without a diagnosis. Be prepared for many years of fighting, but it's worth it if your daughter does have asd. X

It had two positive results for us:

1. it increased DD's confidence to just be herself, rather than masking.
2. it increased her school's understanding that there were certain situations in which she'd need more support. This was vital, for example, in getting her through (and actually enjoying) her first residential.

She's flying now. House captain, top of her class, feeling confident about starting secondary next year.

I’d get diagnosed. Especially as the wait times are so long.
DD seemed fine until secondary school and it all went to shit, this seems to be the pattern for ASD girls. A diagnosis would protect you and help in this case.
Remember an EHCP protects them in education until they are 25, you don’t know what the future holds.

The assessment process can take years, as can getting an EHCP.

She might be doing ok now but for girls it’s usually going into the teenage years that they can start having problems socially which can really impact confidence, self-esteem and mental health.

Also the transition to secondary is huge, and might present challenges.

Having that diagnosis in place will make it so much easier to get support/adjustments from her school, or any other professionals eg occupational therapy (dyspraxia and hyper mobility are commonly associated with autism).

The most powerful reason to pursue a diagnosis though is for her own understanding of herself. If she is autistic she’ll be autistic with or without the diagnosis. But without she will really struggle to know why she feels and behaves differently, and put too much pressure on herself to mask and fit in.

So many women are getting diagnosed in there 30s/40s/50s and feel relief they finally have answers, and can give themselves permission to live their lives the best way for them, not how they ‘should’ be doing things.

A diagnosis will help you and others understand DD better and help DD understand herself better.

You don’t need a diagnosis for any of those things. The Equality Act doesn’t require a diagnosis in order to be covered by it and support in schools is based on needs not diagnosis.

Pupil premium isn’t related to whether a child has a diagnosis of anything or not.

If only that were true in reality.

Well if people are acting unlawfully you can challenge their unlawful practices.

With regards to support, there is a lot out there but you will have to fight for every tiny bit of it! For example:

• EHCP with extra funding for school to provide 1to1 TA support for interventions, transitions or any aspect of the day they struggle with
• individualised timetable
• reduced/no homework
• extra time in exams or alternative way of recording
• play therapy
• educational psychologist assessment who can advise on strategies to help with learning/anxiety/social difficulties
• obtaining ‘reasonable adjustments’ eg modified school uniform, late/early start to school day so not arriving when very busy, eating lunch somewhere quiet etc
• time out of school for therapies or activities eg equine therapy, swimming lessons
• occupational therapy assessment to check fine/gross motor skills, core straight, dyspraxia, hyper mobility etc
• being able to seek advice from SEN Governor and the council SEND lead worker, or local SENDIASS to help advocate in meetings with school/council
• claiming DLA to help pay for extra costs eg sensory aids, activities/therapy
• a transition meeting between primary and secondary school
• attending social groups for autistic children, neurodivergents tend to be drawn to each other
• many others going into adulthood

Also so many great resources such as books, podcasts and support groups that will help you as a parent to understand and support your daughter in the best possible way 😃

The equality act applies to people with disabilities so to be legally enforced you would need a diagnosis. Autism is specifically listed as a neurological condition that would be protected under the equality act and in my experience this has proved invaluable in ensuring the right support and adjustments are in place for my son.

She is different though and is very well aware of it or she wouldn't mask, don't you think she might want to know why? The stress of masking will become too much one day.

You've had some great responses on here already.

Just wanted to add that you can get an assessment and support much quicker through Caudwell Children.

No you don’t need a diagnosis in order to be covered by the Equality Act.

"It is not necessary for the cause of the impairment to be established, nor does the impairment have to be the result of an illness.” link

Although a diagnosis is beneficial for other reasons e.g. understanding oneself many of the things listed e.g. EHCP, DLA, reasonable adjustments, EP assessment do not require a diagnosis.

My DD1 has been on the waiting list for over 3 years and it was a fight to even get her put forward for the assessment. She has just been diagnosed last week aged 13. She masks so well but it has been an increasing burden for her as she has got older.

When I told her, she cried with relief and said I am so glad as now I know why I am the way I am - it’s given her clarity about herself. She is very high functioning but now I can go to the school and ask them to understand that she has ‘needs’ rather than ‘preferences’ about her uniform and speaking in class etc.

@Thatsnotmycar Where I work you would not need a formal diagnosis to be entitled to reasonable adjustments. But a relative at university was told they needed to provide evidence of a diagnosis before they could access support. Same with another who has adhd - no diagnosis, no access to the service.

If the services are refusing to allow reasonable adjustments just because the person doesn’t have a diagnosis they are acting unlawfully.

This 👆👆👆. Times are changing and there’s a huge amount of support that can be put in place. You’re not condemning her to feeling different. She is different. You’re just helping her to understand her differences and then use them in a way that she gets maximum benefit, so she is supported to mitigate the potential negative impact of those differences. (Me - diagnosed this year and currently going through the support options. God, I wish I hadn’t had to spend the last forty years getting here the hard way, even though I’ve been mostly happy).

If the services are refusing to allow reasonable adjustments just because the person doesn’t have a diagnosis they are acting unlawfully.

tell the governments own DSA application that.

DS was 9 when he was diagnosed. He's a very bright masker so does brilliantly at school and I get the exhausted remnants at the end of the day. He's just gone up to secondary and knowing makes it easier to accept differences like struggling to make friends. He's just started doing some interventions to support him socially. He coped in his cosy, little primary school and we're not in a position of him being pushed to crisis point.

I manage my expectations of him better. It's easier to read him and work with him. It's like being told what foreign language you're working with and being given a phrasebook to help. "Poor behaviour" from him is normally about overwhelm rather than choice, and defusing as a priority helps us work through the underlying issue when he can process it and he brings a lot of baggage home.

He's different and we know why and how to tweak his world to make it a little easier to navigate.
Knowledge is power.

DSA isn’t required for universities to make reasonable adjustments. However, it is possible to get DSA without an autism diagnosis, although you do have to evidence the impairment affects the ability to study.