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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
AlexanderHamilton · 04/10/2018 13:21

This is from the horses mouth It's a post my son wrote on a gaming forum.

"Thank you for sharing your experience. I too have struggled with Autism. I had no friends, and no-one to talk to. My diagnosis happened too late, as by the time everything in school had started to be implemented to help me, I was kicked out after I had lashed out multiple times by a group of people who knew that they could easily wind me up.

The school that I went to was a private school, so they didnt have many people who had problems such as I had. I have since moved to a better School, where I have made friends, and now actually enjoy school, due to the support that I get now. "

AlexanderHamilton · 04/10/2018 13:22

I will add to that that even after his diagnosis his previous school refused to implement several small, reasonable adjustments that didn't cost anything other that understanding.

PorkFlute · 04/10/2018 13:26

If you need access to a specialist school that’s different. But every child with asd isn’t the same. If they aren’t going to receive any extra support I can quite understand why some parents/adults wouldn’t want to put themselves or their child through the lengthy diagnosis process of all it will being is discrimination.

AlexanderHamilton · 04/10/2018 13:27

He is now in a mainstream state school and is a totally different child as he has teachers who understand and care.

Kmetsch3 · 04/10/2018 13:37

Our son’s diagnosis helped us get:-
EHCP - a place at a special school
DLA -;£ help
An explanation of shy he sometimes behaves as he does

I think understanding of ADHD etc is removing the stigma

MinaPaws · 04/10/2018 13:42

AlexanderHamilton - I'm really glad he;s now at a school that suits him. Our experience was the opposite. the state school DS was at was useful, almost to the point of being callous. The private school he's now at has been outstanding in its loving support and pastoral care, with weekly counselling, EI and specialist ASD sessions, all without costing us a penny in extra fees.

BlankTimes · 04/10/2018 14:09

Our experience is now historic thank goodness, appalling State primary, bullying, no recognition of any SN. "Didn't see" anything so it took me years but eventually was referred to paed. I knew nothing about the diagnostic pathway in those days but after paed had mentioned dyspraxia, in a meeting with her and school SENCO and me at school I asked of a Statement would be the next step. They both burst out laughing, made me feel like Cinderella who had asked to go to the ball and firmly 'put me in my place'

Private Prep was a revelation, they saw everything and put every available intervention into place. Private secondary helped too, excellent at interventions and excellent pastoral care.

As I should have made clearer above, some schools just don't 'get it' and others do, irrespective if they are private or state. As a parent you need to take the best option for your child. Great Ofstead isn't always a reliable indicator.

I've recently seen a method of teaching called S.L.A.N.T. being introduced in secondaries. I'd imagine it's about the worst thing for a lot of kids with ASD and other SN. If I was looking for a secondary now and they advocated this, I'd look elsewhere

  1. Sit up straight
  2. Listen
  3. Answer questions
  4. Never interrupt
  5. Track - keep eyes on the teacher.
cakesandtea · 04/10/2018 14:11

The prejudice will be there anyway, not explained by ASD, but by just ... whatever bad label comes to their mind. It would surface in education, social life, relationships, employment.

The other consideration is that the child could have a crisis later and without a dx it would delay help even further.

Every parent is right to consider the decision, any decisions.

But I think the very question of cons of the diagnosis might be a reflection of parent's own frame of reference. I don't mean to attack anyone. I had to go through the process of adapting my thinking to DC diagnosis. I had prejudice against disability, mental disability in particular. I wasn't aware of it and of why it was wrong. Basically I never given it a thought before it happened to me. I went through a steep learning curve to understand how DC are different, what this means. It means that 'normality' is more arbitrary that you think and need to be questioned too. You need to push against the assumption, hidden or denied, of the 'superiority' of the 'normal'. You need to support the equality of being 'different'. To do that you need to accept the dx.

The reality is that you cannot 'normalise' the DC on the spectrum, make them 'more normal', you can just make them to hide it for longer until they give up or explode. They do function differently and how differently does not depend on the parent but on the outside world, the pressure will continue to increase. It is the systems in society that "other" people on the spectrum, not the dx.

And any support and understanding at school and the DLA are based on the general awareness and recognition of ASD as a phenomena. If nobody was ever diagnosed, no one could have support with it.

Crackedvase · 04/10/2018 14:21

I'm prepared to be flamed, but our experience is this
Dd 18 was diagnosed with hf autism in 2004, aged 4
That diagnosis helped get her the help to progress, to the point where she was considered 'mainstream' enough to no longer hold a statement aged 9
It did hinder secondary school applications, and she was reluctantly accepted into grammer.
The SENCO was good, but she was often over looked as she didnt have enough traits to warrant help, yet some that held her back (social anxiety)
As it stands now, she won't disclose her diagnosis. She feels it holds her back. She struggles massively with confidence/new social settings.
She has done work experience with kids on various ends of the spectrum and feels she can head in that direction work wise.
She ultimately wants to be a SENCO, and work with kids on the mainstream end.

confusedofengland · 04/10/2018 14:26

This thread is very interesting for me as DS2 is 7 & has suspected autism but no diagnosis. In truth, we have never pursued one nor been advised to. He is in Year 3 at our village Junior school, having attended their Infants for 3 years. He has an EHCP & has done from the start.

He has 1:1 classroom support for 32.5 hours per week. I receive DLA (middle rate care, low rate mobility), carer's allowance & the disability element of tax credits. He does reasonably well at school, is average for literacy, struggling in maths but still not the weakest in the class & receives extra help in that. Has a photographic memory which is useful! He also is very popular & has a best friend. There was a recent incident where he was teased by some older boys in the toilet- in his words, he told them to get out & they did Grin He was not upset by it, Ds1 however was outraged for his brother. He has also had physiotherapy & OT, which he now no longer needs & is discharged & still receives speech therapy.

I guess my question is - what more would he get/how would he benefit with a diagnosis?

PorkFlute · 04/10/2018 14:33

In ds’s case the predjudice was a direct result of his diagnosis. He was being bullied and told an adult and it was ignored for ages because it was assumed he was overreacting or misunderstanding due to having asd. If he didn’t have that diagnosis he would likely have been listened to as an individual - not assumed to be behaving in a way that ‘kids with asd behave’ which as we all know varies very much from child to child.

FrayedHem · 04/10/2018 14:34

it sounds like your DS is very well supported confusedofengland. It would really on be in your case if there were services/schools that required an ASD dx. DS1 is in an ASD base and that requires a dx. He also had a specialist ASD teacher ( from the LA) who was invaluable for him (and me) at primary.

cakesandtea · 04/10/2018 14:36

Confused, your post is very intriguing. On what basis did you get the EHCP with 32 hours from the start, if you don't mind? Was there another condition?

confusedofengland · 04/10/2018 14:37

Frayed, I do feel we are lucky with how much support we get. Ds just has the mainstream teacher, in a class of 30, but a specialist AS teacher visits approximately once a month & advises his teachers. I think it helps that Ds is very passive & rarely has meltdowns, at home or at school, and he is very loving & demonstrative with that, so he is 'easy' to teach.

FrayedHem · 04/10/2018 14:41

The ASD teacher just used to come out to do visits too, but as unfortunately both the primary schools we had him in over the years weren't great, she was an amazing support in trying to get them to do what was required (he had a statement as was). She was the one who told me the ASD bases were opening up, otherwise I would have had no idea. DS1 didn't have meltdowns but by Yr6 he was really disengaged and it was just the worst! Secondary has been much better thankfully.

BishopBrennansArse · 04/10/2018 14:43

Oh believe me Pork even undiagnosed autistics get bullied. My secondary school years were the worst of my life because I was 'weird' a 'freak' - it wasn't having a diagnosis that caused mine.

taratill · 04/10/2018 14:43

PorkFlute I think the teacher is to blame not the diagnosis!

My son was diagnosed at 11 after a complete mental health breakdown due to masking.

He is allegedly high functioning and is extremely bright but his autism causes crippling anxiety and he can't be in school at the moment.

Our daughter is also bright and is in the process of being diagnosed, because of sensory differences she will struggle in mainstream high school , we are looking at options for her in the future.

Totally agree with the fact that high functioning not equating to mild. My son's autism is severe in it's impact on him even though most people would not realise he is autistic due to his masking skills.

confusedofengland · 04/10/2018 14:43

Cakes, we have been very lucky to have on-the-ball professionals from the start.

I suspected a speech/language delay at his 2-year check & the HV agreed & he was sent for hearing tests & SALT. That ST brought up autism & referred him to the community paediatrician. Then he started pre-school & one of his teachers shared those concerns & did a One plan. Then before he moved to school, she liaised with the school, who managed to get a provisional plan in place for 35 hours for a term while he settled. Then they got him assessed by an Educational Psychologist & he got his EHCP & was reduced to 32.5 hours. We've been so lucky to have people that listen from day 1.

confusedofengland · 04/10/2018 14:46

Sorry forgot to say - on his notes it has always said social & communication difficulties, although I don't know if it's a diagnosis.

AlexanderHamilton · 04/10/2018 14:48

Ds was bullied & teased far far more Pre diagnosis.

hipposarerad · 04/10/2018 14:52

If we hadn't gone for DS2's diagnosis he'd probably be permanently excluded by now and he's only 7. As others have said, an autistic person is no less autistic without a diagnosis, but with one certain behaviours can be explained more accurately and support offered. I think that's better than just writing a child off as challenging/shy/anxious/quirky/bit of a loner etc without examining why.

I went to do DS1's assessment today and it's been confirmed he is autistic too which was no surprise at all. He has no discernible support needs at the moment - I think he is an accomplished 'masker' at school, but if he does in future we (both us and school) have full understanding and can act accordingly.

cakesandtea · 04/10/2018 14:53

Confused, this is really excellent, great for your DS. Speech problems were probably the trigger. Your LA sounds very reasonable.

I think provisions for suspected ASD should be front loaded as soon as the first worrying signs emerge, not just for children with SLT problems. The outcome for DC would be much better than kicking the can down the road until they reach the crisis. And would end up costing less for the LA.

PhilomenaButterfly · 04/10/2018 14:55

I've been recently diagnosed, and I don't know yet.

PorkFlute · 04/10/2018 15:00

It wasn’t the diagnosis that caused the bullying but it created a barrier to resolving it. When other children complained of being teased I doubt they were brushed off as misunderstanding others kind intentions!
It wasn’t just one teacher either. I also mentioned a couple of teachers who’ve told me that they’re really surprised about how well behaved ds is - so they had made assumptions before he joined their classes.

Sirzy · 04/10/2018 15:08

Actually in your case confused I would very much be pushing for diagnosis as to me that would be the last piece in the jigsaw to explain everything!