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)

Only helpful. Definitely worth getting.

Thanks again for the messages. Several of you have mentioned that a greater understanding of yourself/themselves has helped with lessening self blame and self acceptance.
I can see this could be a really helpful thing that I hadn't thought through. In addition to the access to services etc.

I’m afraid I have to say bad. My ds was quite badly bullied for a while and was disbelieved as it was assumed he was overreacting or misunderstanding things. Thankfully enough of it was actually witnessed for it to be sorted in the end.
Also every year at parents evening I get a surprised ‘he’s actually one of the best behaved children’ so they are obviously expecting a trouble maker based on his diagnosis which couldn’t be further from the truth.
He is mildly affected and does well academically so not a priority for any intervention that might help him.
It depends on the child I think.

My diagnosis has taken six months.

My ds about a year iirc.

Great for us. DB got his statement at 3 years old, he is now 9 and it has been a wonder of help. He has constant support throughout education, a designated key worker, extra attention at lunch breaks and different classes every now and then to help with social issues.

Outside of education: it has helped with activities. The statement means we can take him to theme parks in the UK and internationally (Disney Paris, Disney World etc.) and we don't have to queue for rides or photos. We would never have been able to have a day out with him like it if not for this.

He is also proud that he is autistic! He and his friend at school tried to start the 'aspie club'.

That is actually my only fear with the diagnosis, Porkflute. That it will be a convenient excuse for some to avoid examining their own behaviour or listening to me. That they will blame my perception if I don't agree or like something.

For me, that's a small factor.

I don't really like the terms "high functioning" or "mildly affected" as it minimises (for me) a very real struggle. The fact that I and my ds don't have academic learning difficulties doesn't mean that we don't have serious difficulties with social learning.

I've had a lot of disbelieving looks about my son's diagnosis. Because quite often you wouldn't be able to "tell". However, a lot of energy goes into masking and "passing for normal". I'm only just realising how much I do unconsciously to mask my difficulties.

The SEN statement also means that the LA are legally obliged to meet his needs in school and that the support can't be taken away.

I do think that the information that comes with a diagnosis is as useful as the person who has it though.
We have had a couple of great teachers who have used their knowledge to make life easier for ds but they have been the exception unfortunately.
I don’t think it’s just true of asd either. I had a friend with asthma at school and our teacher was adamant that they shouldn’t be doing pe and definitely not running despite multiple conversations with her mum telling her that wasn’t the case. She was frequently needlessly excluded from things though obviously knowledge of her diagnosis would have been necessary in the case of a medical emergency.
There are plus and minus points. Your child may be helped and/or restricted due to a diagnosis.

If I didn't have the diagnosis my son would be struggling in mainstream with no support rather than in specialist provision with 10 to a class and constant support.

It's one hard slog and everything needs fighting but he's a happy kid who loves school.

We're also in the system. A diagnosis means an EHCP, access to more adequate support, possibly a place at a special school (best thing we ever did and no shits given about stigma). It helps with applying for DLA. If you've had to take extended periods away from paid employment to care for a child with ASD the money cones in very handy. And it means people understand why your child struggles to cope with stuff that the rest of us take for granted.

I don't really like the terms "high functioning" or "mildly affected" as it minimises (for me) a very real struggle. The fact that I and my ds don't have academic learning difficulties doesn't mean that we don't have serious difficulties with social learning

So true. DD has no cognitive impairment but she can't do "life", it just doesn't make sense to her.

Sadly diagnosis does not mean an EHCP Mornings.

It's been absolutely brilliant. It unlocked a whole raft of support at his school that has made a big difference to him. It changed the attitudes of most teachers from negative to supportive. DS was shocked and upset at the time, but has since recognised some upsides.It really helped me make sense of so many difficulties he had during primary school years. (He was diagnosed in secondary.)

DS1's diagnosis meant he got a place at the ASD base for secondary. He was statemented to start primary too. His diagnosis did mean I had a real battle to get him seen by mental health services, as I had to prove his difficulties were beyond his autism. But to be fair, I think it's really difficult to access any mental health support ASD dx or not.

DS3's diagnosis hasn't made any difference so far, (he's 5) but I feel it is likely to be of more significance the higher up the school system he goes (currently without any support).

I was distraught after DS1's dx, cried so much they no longer do assessments just before Christmas . But it was so unknown and on the tail-end of some difficult family stuff. With DS3 I just smiled. It was 2/3 the same assessment team, I think they were glad not to have a repeat of the DS1 reaction.

I've had a lot of disbelieving looks about my son's diagnosis. Because quite often you wouldn't be able to "tell". However, a lot of energy goes into masking and "passing for normal".

Same here. It exhausts DS to mask as much as he does, but he chooses to pass as NT. Only a small number of his friends know he has autism. he also has some physical disabilities that he;s very self conscious about. He just doesn;t want to be labelled as class weirdo so keeps the ASD under wraps as he can't hide the physical stuff as easily. But it's exhausting for him. It takes its toll.

It's not had the impact I'd have hoped for, if I'm honest.

He was given a diagnosis 4 years ago now, and since there's been very little intervention or support provided or suggested by school. He's in Y8, and copes reasonably well in mainstream, but I get the feeling that because he's well-behaved he flies under the SEN radar. It's frustrating because he's still very much a young person with difficulties; his Autism might not present in extreme ways but it is still there, it is still a barrier and it is still something he needs provision for. His SENCo bandies about words like "high functioning" which is probably quite accurate, but doesn't acknowledge the fact that he's using vast amounts of energy to mask his ASD whilst in school and then comes home bone tired because there's only so much in his reserves.

We've had private therapy sessions for him to help him work through things, but aside from that there's very little by way of support.

Diagnosis or not you are still the same person. Knowledge is power. I don’t understand people shying away from diagnosis for themselves or their children.

The earlier ‘try harder to be like peers’ comment has really upset me, that’s how lots of people felt about me, because I was clever they just assumed if I adequately channelled that cleverness I could learn to be normal.

It’s not acceptable to say to someone with a disability well you might be missing a limb but you are very muscly elsewhere so you’ll just have to compete in sports day like everyone else and when you come last we’ll all be disappointed and say if only you channelled your energy appropriately you’d be normal.

It’s taken me so long to accept myself and not constantly feel wrong.

I think mildly affected for my son is pretty accurate. As well as not having any cognitive impairment he has good friends, has few sensory sensitivities and in the main gets by fine and his difficulties aren’t particularly visible most of the time. If he did well academically but had massive sensory issues/social difficulty I wouldn’t consider it mild.
The fact he only struggles occasionally though means that it’s often written off as ‘needs to try harder’ and ‘we know he can do this’ because he did it on a different day in different circumstances.
And don’t start me on the teachers who don’t believe in autism and make it their mission to discipline it out of them

For my kids it was as simple as it opening doors to support they needed, and it did.

For me, diagnosed as an adult after feeling like a fish out of water my whole life it was life changing.

And yes to masking being exhausting!

I had 3 separate appointments the other day, which meant peopling. I was a heap on the floor when I got home, absolutely emotionally and mentally exhausted.

The saddest instance of this in my teaching career was trying to help a lad who came to us in Year 3 with diagnosis of Asperger's. But his parents did not pass that on; they "didn't want him labelled", they "wanted him treated just like all the other boys", and it wasn't until matters reached crisis point in Year 5 that they finally came clean. We had included boys with a similar diagnosis before; teachers were more than willing to follow the advice on support plans, and he was intellectually very high-functioning. I was one of the members of staff who had queried some of his reactions to daily life, but I'm no specialist. Unfortunately, he was easily triggered into meltdown, and a few of his less pleasant peers found it entertaining to set him off. He was eased on his way into the Senior School, but the social damage already done proved irreparable. He dealt with it by self-medicating with weed, not quite making it to GCSE's in consequence.

I also think the support offered as a parenting vary from area to area. We went on a course that contained nothing you couldn’t find out easily from spending 10 mins on the NAS website.

@AornisHades In my experience as a woman who has gone 38 years without a diagnosis and then got diagnosed 18 months ago I wasn't able to be like anyone else no matter how I tried and that led to some pretty poor mentally health. It's only since my diagnosis I've been able to be at peace with me and forgive myself for being different, at the time I constantly blamed myself for not being good enough.

twosheds as far as I’m aware children are supposed to be offered support based on need rather than diagnosis. The school will have been aware of the areas in which the child was struggling and the parents failing to pass on the name of his condition, which I admit was odd, shouldn’t have prevented him from being supported.
What do you do about kids who have genetic conditions with no name?

Good. Definitely. I no longer feel I have to justify or explain how I parent him to (stupid) family/friends. He is getting more support in nursery. He goes to a weekly stay and play ASD group - he loves it and I meet parents with similar experiences. We are now able to claim DLA, and hopefully carers allowance.