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

[frazzledmum101]

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)

DS3's reception teacher kept querying his dx with me for the first few weeks. Was I sure he had ASD? Was it diagnosed by a Doctor? I'd given them all the assessment paperwork. But when she started to "see it" then she accepted it.

DS1's reception had him sit by he feet at carpet time for the first term in case he ran off. He'd never been a runner and when she realised this she was really shocked. I had no idea she'd been making him sit by her feet. She also tried to ban him from the nativity play in case he ruined it for the other children. Again based on her belief of what boys with ASD are like (her words). With hindsight I should have removed him then.

I still don't regret getting the dx for them both though.

I'm about 50 years in Bishop :) and yes my MH is whacked but tbh dd's isn't great and there's not much help for her. I'm hoping knowing why she doesn't fit in will make it better.

My sons diagnosis was super quick, btw. Spotted immediately by a very experienced community specialist paediatrician.

I think the problem in twosheds example was the parents wanting him treated like other boys. It is very difficult for teachers to make adjustments if the parents are resisting that. The fact the child had a diagnosis and the parents were still in denial just highlights how far some parents will go to maintain their own sense of being ‘normal’ at the expense of their child’s health.

People do it with physical illnesses too - a woman on here said how she was born with a heart condition but her parents didn’t acknowledge and wouldn’t seek treatment. They too had the condition and died youngish (she was teens I think) and she was diagnosed as an adult.

Her stories of the PE teacher trying to accommodate her exhaustion whilst also being obligated to make her join in PE, all the time being vaguely confused what was going on with her, were strangely quite evocative of my own school experiences (although my difficulties were entirely different).

The difference is that most people would be horrified if you had denied your child’s heart condition and resisted a diagnosis and medication. But people consider whether or not to seek an autism diagnosis as if not doing so is a reasonable position

For my dd it has been good. She is different and having a reason for that has helped her emotionally. My understanding too has increased- her masking through the day means she's pretty awful after school sometimes, and frankly, if I didn't understand the reasons behind that it would be much more of a challenge.

She also has so much support at school- she needs nothing academically, but they have put many structures in place to help her socially and emotionally. Just as an example- if there is a fire drill that week, they tell her so that the sudden noise and change of routine isn't as awful for her. They have learnt her triggers and this has meant no meltdowns at school . Since diagnosis school has been nothing but helpful and considerate.

Schools need to act in the best interest of the children. If a parent tells them they don’t want their child taught maths the school don’t have to agree.
Sounds like that child was failed by both the parents and the school.
It should be a no-brainer that an asd diagnosis would be a positive thing - that teachers would be well informed and resourced and able to use the information to help the child. Unfortunately that isn’t the case a lot of the time ime.

And of course it’s a reasonable position not to seek diagnosis. Plenty of adults choose not to seek an official diagnosis and are content with knowing themselves and what their difficulties are.
A physical condition which requires medication or physical treatement rather than interventions and understanding (which may or may not be forthcoming) is different.

There was a time when people chose not to acknowledge left handedness

Plenty of adults coped

Doesn’t mean it was right

We are mid process. The diagnosis will be hers to disclose. She can choose to disclose or not. At school accessing the (minor) support she needs is a nightmare. I hope the diagnosis will help.

I'm also mid process. Diagnosis will bring relief and validation for me. I hope it will give me peace and help me make sense of my struggles.

Not getting diagnosed won't "cure" her or stop her struggling. It will just mean she feels more out of control about it all. The label gives a reason and it's very very helpful in my experience.

Well if teachers were likely to look at the class list and mark out the left handed children as troublemakers and disbelieve them when they are bullied because left handed kids must be misinterpreting what is happening then I’m sure there would be a fair few parents and children reluctant to be forthcoming about their handedness.

And I agree that not getting a diagnosis won’t make difficulties go away but getting one doesn’t guarantee help either and can bring other, different struggles.
It is a decision only the parents can make or adults if they are considering seeking a diagnosis for themselves.

I had a child attend our drama classes who we strongly suspected had autism or something similar. The problem was worse when she was having 1:1 sessions to prepare for an exam.

We used to hire rooms in a local primary school to hold the classes and had an excellent relationship with the headmistress of the school who had a very holistic approach to education. She probably broke confidence but it turned out she had similar concerns, the child's brother had a diagnosis but the parents refused to investigate further and had just removed the child from her school to another one.

So I put all the strategies in anyway but we were unable to apply to the exam board for consideration/adjustments and she had a meltdown in her exam.

Later, in secondary she left her mainstream school half way through Year 10 & ended up failing most of her GCSE's. She was also self harming by this point.

There are lots of adult with ASD who suffer mental health problems thought to be caused/made worse by lack of or late diagnosis (particularly women).

If you’d child couldn’t hear properly would you worry about labelling her as deaf? Or if she couldn’t regulate her blood sugars properly would you worry about labelling her as ‘epileptic’.

It’s exactly the same, her brain and neurological functioning work in a different way. She wil find certain things more challenging but if she and you know why she has difficulties is certain areas, you are then able to implement strategies to help. Of course you can do this without a diagnosis but she may wonder why she is not NT or struggling and it can be helpful to say ‘X is more difficult for you because you are autistic’, the same way as you would say ‘reading is harder for you because you are dyslexic, it’s not you’re fault, we’re goong to do XYZ to try and help’.

The twoshed's example is very typical of what happens to DC on the spectrum when they are high ability / high functioning. The system watches until DC go through all the circles of failing until they reach the 'threshold' for diagnosis and EHCP. By that time the problems snowballed, their confidence and mental health are damaged and educational prospects diminished. My DD school were refusing to make provisions, telling me that we don't have a diagnosis as a basis for support and that she is one of many and they don't have resources and yadayada they don't care because DD is just too dam, until it exploded in year 5 and suddenly we have a diagnosis and an EHCP, DD is very bright but her MH is in tatters. So although schools are supposed to make provisions without the dx, you need a dx to help your child ASAP.

Positive for my son when he was about 13.
He is very clever, so school never questioned if there was anything behind his clumsiness, slowness, social problem etc. I asked teachers 3 years running if there could be anything wrong with him, but was told no each time. It was only because of mumsnet that I was able to work out what I thought was going on and push for a diagnosis, which took forever.
It helped my ds understand why things were sometimes difficult for him. It certainly helped us as parents to understand that he was not being naughty when he could not seem to remember 3 simple instructions, even though he could remember every bloody fact about every bloody pokemon! Although he did not need much support at school, he had a card where he could get out class if things became too bad and he could have had extra time for some of his exams (he refused as he didn't want to seem to be different or for his good grades to be attributed to him having more time).
I wish he had got a dx earlier as maybe we would still have some of the friends that we stopped socialising with when he did not fit in with all the other children. On the other hand maybe we would have protected him too much / made excuses due to his dx, and he would not have done as well as he has.

Our DS was diagnosed in about Y2/3. He's quite high functioning, but some things were put into place at school. However, how much they actually helped him is another matter. The impression I got was that the teachers did an 'autism in school' course, and put those lessons into place, but they didn't really apply to DS. It came from a place of kindness, but didn't seem terribly effective - he pretty much lost a year at school in Y5.

We moved him to a private school for Y6 (we're lucky to have the ability to do so), partly to help him with the transition to Y7, but also because we suspected he'd respond better in a smaller class. This seems to have been the case (he's now in Y7). He doesn't seem to need too much support from the school, but we're in touch with the senco for ideas etc.

However, I will say that once we got the diagnosis, we've been completely abandoned by the health professionals. We were given a leaflet for a parenting course, which (a) was held about 3 times a year at ridiculous times (a 6 week course at 10:30-11:30 on a Wednesday 50 miles away say - completely unworkable around work commitments) and (b) covered autism as a whole, and DS' needs aren't that severe, and (c) we felt we were generally meeting his needs instinctively already. We've been given no kind of advice on any other help we can access other than to look at the NAS website (which we'd already done), or how school could support him. We've got no idea what level of support he'll need as he gets older, we're trying to teach him independence skills as we go.

So by all means, I think a diagnosis is good, but it's made little real difference to any of our lives - we don't treat him any differently than we did already (as you would with any individual child - you just adapt to whatever their needs are), but school are more aware and open to support than they would be without a diagnosis.

People comparing it to a broken leg are missing the point imo. A teacher isn’t going to make negative assumptions about a child with a broken leg, tell them if they try harder their leg won’t be broken or believe the broken leg doesn’t exist.
You need to work out if the help your child will receive with a diagnosis will outweigh the predjudice they will receive as they will likely get both to varying degrees. It will depend on your child and the type of school they attend. It’s not right but pretending that predjudice and ignorance around asd don’t exist helps no one.

But without a diagnosis they will still be the same child. They will still act in the same way. They will still be judged for behaviour. Probably even more so though because they probably won’t be getting the right support and people won’t be able to understand why they are behaving in that way.

Adiagnosis doesn’t change the person. It does help to understand things though!

It's been positive for my DD. Without it she would have probably been expelled from Primary school (and with little idea of where else to send her). And when she transitioned to secondary it made things easier and the school put in place a lot of support to help with the transition. They have taken most of that away as she doesn't need it, but they do still make "allowances". She has done very well there.

But nope we didn't get much support with the diagnosis. It is just a useful label for us.

Well without a diagnosis my child’s teacher wouldn’t have told me that ‘surprisingly he’s really well behaved’.

Or had to put up will bullying for so long because the other child wasn’t being mean obviously ds was just misunderstanding things

Porkflute, yes the dx brings the discrimination. It would happen anyway through difficulties, bullying, isolation. DC end up at a disadvantage one way or another through multitudes of trajectories.

You need the key to understand and analyse what is happening, how your DC 'works' inside, and you also need access to the right support and expertise at school, later at work, everywhere in life. The dx provides that key. It is liberating, empowering. It also provides some legal protection.

I think ASD is diagnosed increasingly more frequently because of better access to dx, but also because the societal pressure on people from young age makes it increasingly difficult if not impossible to stay under the radar. The 'net' sort of catches up with DC at different stages.

I think it would actually help to reduce discrimination if autism was discussed more often, more people would 'come out'. Hiding it only increases the stigma and legitimises discriminatory attitudes. It shouldn't be viewed as a shameful deficiency, but as a difference that creates a disadvantage at the contact with society.

Autism should be discussed as difference that puts people at a disadvantage due to societal attitudes and set up. I am glad that NAS finally decided that their purpose is to "make the society work for autistic people". For this to happen ASD needs to be discussed openly.

I was diagnosed at 27 (34 now). It was amazing. It may not have given me additonal support, but it explained to me so much of my childhood. It also meant that I could (and have been) offered more appropriate mental health support. I have a number of mental health issues - often as a consequence of things that happened because of my autism (bullying, abuse, being taken advantage of etc.)

But surely parents have to consider that if their child is, for want of a better term, mildly affected and won’t qualify for any extra support at school. Do they want to subject them to that predjudice?
My ds is diagnosed. I honestly can’t think of anything good it has brought. I had investigated how to help my child with his particular struggles and claimed dla before he was diagnosed. He gets no extra support at school. If I had my time again I likely wouldn’t have gone down the diagnosis route.
The op isn’t wrong to question whether a diagnosis is always worthwhile. Ime it wasn’t.

A diagnosis can certainly open the doors to access help BUT some schools are worse than useless when it comes to kids who are not NT. They just don't "get" it. If you have a child who is diagnosed or in the process or if ASD is just suspected and your child's school is as above, then a change of school could open the doors to understanding and better provision.

It shouldn't be that way but unfortunately, it is.

Conversely, some schools just manage every pupils' needs without a diagnosis, but it must be said these are in the minority.

As a parent of a pupil with ASD, you have to be on top of the game, know how to get the best provision for your child and recognise if school is resistant, a different school may well be better.

I've noticed on this thread the spectrum being referred to as linear, and "mild" being used, it's not the case, this graphic illustrates the spectrum in a better way, showing how each child and person has their own individual attributes.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Also for sensory issues, this booklet is the best I've seen for a long time. www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117