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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Has getting an ASD diagnosis been good or bad for you/your child?

107 replies

frazzledmum101 · 04/10/2018 09:51

I have finally started the process to get my dd a diagnosis for asd.

I am sure it is for the best really, but I am a bit overwhelmed by it all. I'm worried my dd will be 'labelled', 'othered', 'given up on'. I guess I am struggling to accept it if I'm honest.

If you have a diagnosis yourself or one for your child. Has it helped? Has it been a good or a bad thing in the long run? (Please be kind - I'm trying to do the right thing by dd)

OP posts:
AamdC · 04/10/2018 10:22

Well my child has severe autism and learning disabillities its not a label its a diagnosis and regardless of whetr your child maybe onnthe spectrum it should help with accessing support

minisoksmakehardwork · 04/10/2018 10:25

We are in the system for diagnosis at the moment with one, possibly two of our children. We choose to see diagnosis as a key rather than a label. A key that will help us access support we currently cannot as they are not diagnosed on paper yet.

AlexanderHamilton · 04/10/2018 10:27

It has been instrumental in accessing support. Also for dd it really helped her mentally to know there was a reason why she felt "different"

worridmum · 04/10/2018 10:28

It opened the doors for the right support for my children, so it was a great thing though some of my parents generation said why would i want them labelled (they had HFA as my children are not as worse of as their cusion whom has severe autism).

But wuth the diagnosis it opens doors to proper support and access to schools that could be a better fit for your child.

LastMinutePanicArgh · 04/10/2018 10:28

As someone who resisted an ASD diagnosis for their child for a long time I can say that unless your child is at the mild end of the spectrum you will find that people apply that label whether you like it or not based on their own observations. It's made zero practical difference in our case but is sometimes useful as a shorthand if things take a nosedive in public.

FYI it took almost three years to get a diagnosis.

TheRedRoom · 04/10/2018 10:30

It has been 100% a positive thing for our ds (now 8, diagnosed at 4.5). It gave him access to a huge range of therapies and social skills groups that he wouldn't have had and gave us access to the right professionals and information to help us parent him in a way that suits his way of seeing the world.

Sirzy · 04/10/2018 10:32

I hate the view that it’s a label. It’s a diagnosis.

Ds has asthma. Having that diagnosed has meant we can access treatment and support.

He also has ASD and ADHD (amongst others) having them diagnosed has meant we can access treatment and support.

There is no difference between the two. Both are medical diagnosises not labels.

LonnyVonnyWilsonFrickett · 04/10/2018 10:33

I think it's been an incredible thing for my DS.

It opened the doors to more support (in Scotland they're supposed to support the child, not the diagnosis but that overwhelmingly wasn't our experience and pre and post-dx support was like night and day).

It's given us more of a key to his support

It's given him a HUGE insight into who he is, why he sometimes feels the way he does and why the world feels 'wrong'

And, sadly, people are labeling your child right now. Some of the labels used for mine were 'freak' 'shit at sports' 'rubbish friend' 'weirdo' 'unable to focus in lessons' 'that kid who just can't be reached' etc etc etc. I really, really prefer 'boy with autism and dyspraxia who needs specific support in areas x, y and z'

Original poster
frazzledmum101 · 04/10/2018 10:33

Thanks everyone so much for your responses. 3 years for a diagnosis Last minute ! I'm horrified it took this long. I know it wont be quick but I had no idea it would take that long.

OP posts:
LonnyVonnyWilsonFrickett · 04/10/2018 10:34

And, as Sirzy says, no-one frets about labels like 'asthmatic' and 'boy with the broken leg'...

Original poster
frazzledmum101 · 04/10/2018 10:36

Also - I'm sorry if I have offended anyone using the term label. I really didn't mean to. Just trying to get to grips with it all.

OP posts:
Sirzy · 04/10/2018 10:37

I wasn’t offended, I was more pointing out that you need to get out of the mindset of seeing it as a label.

AlexanderHamilton · 04/10/2018 10:37

I don't think any of us who have been through it and remember the fights and feeling of being overwhelmed would feel offended at all.

hooveringhamabeads · 04/10/2018 10:39

I think it’s mostly been a positive thing for my dd, in that we have been able to access support. Although she doesn’t like the fact she has Aspergers and calls herself an ‘autistic retard’ :(

Also being able to get DLA and carers allowance has been very handy, as well as access passes at theme parks etc.

The good thing is that as adults they can choose to disclose it or not, so if they would rather people didn’t know that’s up to them.

RangeRider · 04/10/2018 10:41

A good thing for me. Easier to explain to people why I struggle, and I think it will be even more useful when I'm even older and struggle more (the older I get, the harder it gets).

ScattyCharly · 04/10/2018 10:41

How old is your dd?

Allthewaves · 04/10/2018 10:43

I'm going for hatrick with my dc. It's been good for my kids (higher functioning) in the sense the know who they are, they know why they get tweaky, that they may view social situations differently - there's not such pressure to fit in, they can be who they are.

For school they needed a diagnosis to allow reasonable adjustments to head off explosions.

I'm hoping as kids get older they can learn more about their asd and how it affects themselves, social interactions and mental health. I always figure the better we know ourselves and how to manage our differenc3s positively can be much better for mental health

Original poster
frazzledmum101 · 04/10/2018 10:46

RangeRider - good to hear it's been useful for you. And so sorry to hear that it gets harder as you get older. TBH I think that is one of the things that worries me for dd - I do think that it will be more difficult for her as she gets older. This just makes me so sad for her.

OP posts:
bumblingbovine49 · 04/10/2018 10:48

I felt awful when DS was diagnosed aged 6 (He is nearly 14 now) so that is really normal. I have mostly come to terms with now but it is still hard sometimes.

He still hates the idea of being different and struggles to acceot his diagnosis. but it helped the school apply for an EHCP which has been invaluable in getting him into the right school for him (regardless of location) and in getting accommodations for his behaviour. He would have been excluded many times over in the last 8 years if he had not had an 'explanation' for many of his behaviours,. He is managing in mainstream school and currently on tack to do 9 GCSEs which if he had been excluded constantly would have been much more difficult

We also get DLA which is handy, though I don't think he will qualify for PIP when he turns 16

Dinnaehinksae · 04/10/2018 10:52

It's kind of been the opposite for me, my dds diagnosis meant the support she was getting was taken away as they said it was just part and parcel. There's been no other help forthcoming no matter how hard I try.

Doubletrouble99 · 04/10/2018 10:55

Although our DD already had other diagnosis - ADHD, Sensory Processing disorder, attachment disorder(adopted) - Her diagnosis of ASD has completely changed what help is available. It actually makes me quite angry as I had been struggling with so much for her even though she had recognised diagnosis and we were told that they look at the individual when looking at any help they need. Completely wrong, all of a sudden she was offered horse therapy, weekly club for disabled children and a place at a holiday activity club. She even has sessions with a spectrum support worker in school. We were then accepted by SS as a family requiring help from their disability team!!! What changed?

flowercrow · 04/10/2018 10:58

got one in later life as an adult. Has been life changing. My autistic friends and I see it as recognition, not labelling. There is a whole community of autistics out there so you can feel not alone. Having understanding of how your brain works differently and why certain things are harder for you lessens low self esteem. It's not like we don't notice we're different and having a reason lessens self blame.
In addition for me, it has provided access to support services.

AornisHades · 04/10/2018 11:03

I do wonder sometimes if we hadn't had the diagnosis for dd whether she would have tried harder to be like her peers, whether she would have had to develop coping strategies where she has been able to opt out.
However rationally I can see that she was always different, that the difference was growing before anyone else wondered about autism and I suspect things would be very much worse than they are. At least she knows she's not doing something wrong and she sees the world differently for a reason.

QuantumGroan · 04/10/2018 11:04

DS is at the mild end of the spectrum -when he was first diagnosed at 9 years old, it has helped us talk through some of the challenges he has in a less critical way, when you can blame the autism it doesn't feel so personal for him. He's now 15 though and won't even hear it mentioned - he thinks he was misdiagnosed!

Shednik · 04/10/2018 11:08

I'm newly diagnosed.
My ds has had his diagnosis for five years.

I think the diagnosis helps understanding. It enables us to access support and explain his needs to others. It also entitles him to reasonable adjustments under the equality act and DDA. It enables others to understand him.

My diagnosis is enabling me to understand myself. Without it, I grew up feeling like a freak, hating myself, not understanding why I couldn't fit in, feeling ashamed and defective.

I also experienced a lot of negative judgement.

My view is, that if your dd has autism, she still has it with or without a label. She will still be and feel different and will still struggle. But undiagnosed, she will forward so without understanding or support. And without self-awareness and the ability to find tools to make her life easier.

Fwiw, life hasn't got harder for me as I got older. School was the hardest time for me. As an adult I have found friends who get me and had more control over my environment so I'm less of a square peg in a round hole. I do struggle socially and I have more insight now. I'm hopeful that at nearly 40 I can still find ways of coping.