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I think that DD is autistic but DH is against diagnosis -- what to do?

(19 Posts)
Toofewhoursintheday Mon 05-Feb-18 17:36:46

Over the past four months or so I have come to the conclusion that DD aged 12 is probably autistic. The family therapist who first suggested the idea feels DD fulfils the criteria for referral. However, DH does not want her to be diagnosed because he feels there are more disadvantages than advantages to a diagnosis. His worries are that she would be labelled and that she would feel worse with a diagnosis as she likes to fit in and would then feel different from all the others. I am more in favour of diagnosis, especially as she has severe anxiety issues and I think it might help her to know why she feels so stressed all the time. I had serious mental health issues as a teenager and young adult and would do anything to prevent is from happening to her. I cannot stop thinking about this and am obsessively reading about girls and autism, but have not made headway with convincing DH that a diagnosis would be good for her. Is diagnosis better or should we just wait and see?

Ellie56 Mon 05-Feb-18 19:15:15

If your DD has severe anxiety issues at 12, they are likely to get worse, and if she has autism, she has autism with or without a diagnosis.

As I wrote on another thread asking a similar question, yes I think it is a good idea to have a diagnosis.

Better understanding instead of people thinking you're just weird, possibly more support at school (depends on the school) and legal protection at school and in the workplace.

Autism is covered by the Equality Act and recognised as a disability.

Marshmallow09er Mon 05-Feb-18 19:36:25

If she is autistic, she will be whether she's diagnosed or not.

It's very common for husbands to lag behind a bit when it comes to seeking diagnosis (I've seen many similar posts over the years on here, and my DH was the same at the beginning)

It's useful to view it not as a label but a diagnosis, like you would dyslexia or epilepsy.

Toofewhoursintheday Mon 05-Feb-18 19:55:53

Thank you Ellie and Marshmallow -- it's really helpful to hear your views. I'll just have to work on convincing him! The first step is to get her put on the waiting list. If he agrees to that its a step in the right direction.

We have not talked to her about our thoughts re/autism. I feel that's dishonest... I just wish I could be more open, which is more my nature!

Ellie56 Mon 05-Feb-18 22:09:27

You might find this thread useful:

www.mumsnet.com/Talk/_chat/3159374-Kids-think-my-DD-is-weird-Wondering-if-they-have-a-point?msgid=75377302

Toofewhoursintheday Mon 05-Feb-18 22:21:18

Thanks Ellie -- very helpful!

Ellie56 Mon 05-Feb-18 23:03:18

And another one with some recommended reading and video clips.

www.mumsnet.com/Talk/special_needs_chat/3154179-Has-anyone-regretted-seeking-not-seeking-an-ASD-assessment?msgid=75258559

HardAsSnails Tue 06-Feb-18 07:34:29

It really is so much better being autistic with a diagnosis than without.

Your dh needs to think about how he'd feel about other diagnoses, eg would he prefer she wasn't diagnosed with anxiety? If not, why does he think it is it ok to be diagnosed as anxious but not autistic. Does he think being diagnosed will make her more autistic or reduce people's expectations?

Toofewhoursintheday Tue 06-Feb-18 11:40:53

Both threads are very helpful — thanks so much!

Toofewhoursintheday Tue 06-Feb-18 11:44:08

Hard as snails, I think he is worried about lowered expectations both her own and those of others. I’ve tried to see it from his viewpoint— he is very accepting of diversity so perhaps does not see value in defining this. I am at the other extreme, I always want to know exactly where I stand. But ultimately it’s about DD and to figure out what’s best for her... that’s where I am struggling

SpringerLink Tue 06-Feb-18 11:46:15

Ellie - your advice is awesome. You gave really great advice on my thread too, also relating to whether to pursue an assessment for my DS. I'm really feeling a lot more positive about getting the assessment done, no matter what the outcome.

I've also embraced using strategies for autistic children with my DS and that is making a real difference. You don't need a diagnosis to read up about changes to parenting stratagies and what support to ask for from school. I've realised that irrespective of the diagnosis/no diagnosis outcome, my DS needs support for his challenges, and support tailored for children with ASD works for him too.

SpringerLink Tue 06-Feb-18 11:50:32

You can try using visual timetables, timers for activities, collaborative problem solving for things your DD finds challenging (I'm following the approach from the book "Raising Human Beings"), anxiety workbooks (ours is called "Starving the Anxiety Gremlin") etc and see if it helps.

I'm also much more aware of planning in down time and alone time for DS now, and I think it's all working to help him to keep his behaviour on track more often than he used to be able to.

HardAsSnails Tue 06-Feb-18 12:34:10

It's great that he's accepting and embracing diversity, the problem is that in the big wide world that's often not enough. Resources are scarce and most autistic people need supports and adjustments of some sort, to access those we have to have proof of our difficulties, and diagnosis isn't just about a 'label', it's also a process that identifies and evidences our strengths and weaknesses. There's also something important in knowing yourself and finding your tribe which can be easier with a diagnosis.

BashStreetKid Tue 06-Feb-18 13:58:15

Check out the Curly Hair Project. Although it's for people with autism generally, it was started by a girl with Asperger's and there are some brilliant materials on there; they also run some very good talks.

Toofewhoursintheday Tue 06-Feb-18 14:21:18

I’ll try the anxiety gremlin workbooks — that’s DD’s biggest problem. I agree that planned downtime is key as DD gets completely overwhelmed.

I’ve also been meaning to look at the Curly Hair website; thanks for suggesting this!

Hard as snails, I take your point about diagnosis being a process rather than a label. Will talk all this over with DH again

ObscuredbyFog Tue 06-Feb-18 19:01:05

I'd just like to add one word to Marshmallow's excellent sentence

"It's useful to view it not as a label but a medical diagnosis, like you would dyslexia or epilepsy."

Really, that's what it is because it's diagnosed by medical professionals, - not a random on the bus, not a random on the internet, but a real proper Doctor.
I really do think Dads just don't somehow understand this as the huge amount of them on here who spout the same load of flannel about labels. You put a label on a suitcase. You have a medical diagnosis for a child's medical condition. The child will have that condition whether they are diagnosed or not, but they are unlikely to receive any help without the medical diagnosis.
They will receive no help with a label attached to their jumper.

You've had some great advice on this thread, MNSN at its best flowers

Toofewhoursintheday Wed 07-Feb-18 14:20:16

great point by Obscured!

The advice has been incredibly helpful. Thanks everyone!

Ellie56 Mon 12-Feb-18 01:39:02

His worries are that she would be labelled and that she would feel worse with a diagnosis as she likes to fit in and would then feel different from all the others.

he is worried about lowered expectations both her own and those of others.

Your daughter is already experiencing huge anxiety. I would be worrying much more about this.There have been a number of threads on here recently about children with such high levels of anxiety they cannot even go to school. How do you or DH know that DD doesn't already “feel different from all the others”? Have you thought that her current anxiety is caused by trying to “fit in” and feeling confused because she finds it difficult and everybody else seems to find it so easy? If she does have autism, and appropriate support is not put in place, these anxieties will just escalate to the point where she can't do anything, and she won't be in a fit state to have any expectations, apart from getting from one day to the next.

It is well documented that those on the autistic spectrum are at a higher risk of mental ill health than the general population.I know a girl who was not diagnosed with ASD until she was 15, and then only after having a complete nervous breakdown. She was in and out of education for years and wasn't able to go back into full time education until she was 19, and had an EHCP and specialist provision.

Before he had a diagnosis, DS was “labelled”. He had several labels. "Naughty.“ ”Awkward.“ ”Lazy.“ ”Rude". None of these labels were remotely helpful or supportive.They just gave the teacher a reason to shout at him and keep him in at playtime, another reason for our son to hate school, and 15 years later, another issue that had to be addressed through therapy.

DS was diagnosed with ASD when he was 7. I have never ever considered that diagnosis as a label or a disadvantage. Instead I have found it has been immeasurably useful and empowering.

Because of that diagnosis I read up and researched everything I could about autism, so I knew what it meant for DS and I had a greater understanding of his needs. and was able to think of strategies to help him which made our lives easier.

Our son's diagnosis informed our choice of secondary school. He didn't go to the school up the road, with his brothers and all his classmates from primary school, where the SENCO showed complete ignorance of autism and didn't give a toss.That would have been totally the wrong place for him.

Instead, we chose to transport him to the school 6 miles away in the next county, where the SENCO was knowledgeable and compassionate, and staff had huge experience of ASD, where there were links with a special school for children with autism, and where there were facilities for learning in smaller groups and 1:1 in a quiet and calm environment. Because it was the right school, our son settled very quickly and was very happy there.

Over the years, the knowledge that DS has a diagnosis has empowered me to stand up for him and explain to teachers and others who didn't understand him, about autism and how it affects him. and given me the confidence to insist on reasonable adjustments being made for him, knowing that his diagnosis means he is protected from disability discrimination by equality legislation. Even if it is only simple things like asking for him to be exempt from wearing a swimming hat because of his sensory issues.

But crucially, that diagnosis has been the passport to the fabulous specialist college where he has been for the last 18 months, where expectations are high, where he has made outstanding progress in all areas, where he has acquired the confidence and the skills to do things I would never have thought possible, and where he is so happy that the debilitating anxiety he once had is now hardly noticeable.

If he hadn't had a diagnosis of autism, which is part of that college's admissions criteria, DS would still be stuck at home after the disastrous experience in mainstream FE that reduced him to a complete nervous wreck, and almost broke him.

He would still be hiding away in his bedroom learning nothing, withdrawing further and further into himself, worrying incessantly about his future, and spiralling into ever increasing anxiety and depression.

I don't agree that a diagnosis “lowers expectations”. I think it's about realistic expectations, that change over time with the right support and the right education. If anything our expectations of DS get higher all the time, as he continues to surprise us with his achievements.

He would still be the same gentle, quirky, endearing young man without a diagnosis, but with it he has been enabled to do so much more than he would otherwise have done, which has given him and us, hope for the future.

Toofewhoursintheday Tue 13-Feb-18 01:53:13

Thank you Ellie. I am so glad your son’s school and college have helped him in this way! We are currently moving DD to a local school to reduce stress as she found the travel to her school very stressful. The local school is also a lit less pressured (or so I hope!) and DDs best friend is there, a very kind and gentle girl. We are taking the anxiety very seriously especially since I have personal experience of the effects mental health issues can have. DH and are meeting with her therapist next week and I will push again for pursuing a diagnosis.

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