Possible autistic daughter

[FFSReallyreally]

I am wondering if my 6yr old DD is autistic. Up till now I have put it down to things like a very difficult start at school, being summer born, and hoped she would grow out of it, but she doesn't seem to be improving.
She has regular meltdowns, particularly after school, finds it difficult to regulate her emotions/frustrations, she finds it difficult to make friends, appears to be dependent on 7 and 4 yr old siblings and I suspect she mimics their behaviour. She is a terrible sleeper, fussy with her food, and she picks and chews at toys/ clothes etc.
She is however one of the kindest childen I have ever met, very empathetic and goes from one extreme to the other.
We have just moved house/ schools and she is finding it difficult.
What is the difference between a child who is socially awkward and why, and actually autistic?
I want to do the absolute best for her, and get her support if she needs it, and not wait for things to get worse. However DH is very much, he doesn't want to make a mountain out of a molehill, and does not want to get her assessed as she will feel labelled and it will make a big thing of it when it doesn't need to be.
What shall we do?

Sorry shy, not why!

Get her assessed.

My son has been assessed and diagnosed. He is now 9 and we started the process at 6.

If she is struggling this much in primary, how will she manage with the change to high school? Not a lot has changed for my DS since being diagnosed, but it has opened doors to extra support at school. It also means at high school, in theory, reasonable adjustments can be made for him.

I would get her assessed that way if she is Autistic or has a condition similar to it you can move on from there.

If she is not at least you know and won't be wondering.

This was my dd. I suspected but was never sure.

Shes 15 now and waiting for an assessment. DH was always ‘she’ll be fine stop fussing’

GCSE has been a nightmare. Get her assessed now. Mine was very smiley and loved being with people. Also empathetic.

But she has terrible anxiety, hates noise, crowds, lights, and lots of other sensory things.

Get her assessed. Having the additional support in school has made such a huge difference to my child. Why would you want her to be distressed after school if she can have accommodations in school which allow her to be regulated in the evenings? [rhetorical question - I realise you don't WANT this]

You can also point out to your DH that she will acquire labels which are far less friendly than 'autism' if she is autistic. Such as "terrible sleeper," "fussy" and "socially awkward!"

Labels are for cans of food- your daughter won't be labelled- you will just have the information you need.

Autism will affect her if she has it- but it won't be all that she is.

I cannot beat this attitude of "don't label"

It only EVER applies to neuro-diversity or my issues. NEVER physical issues.
My daughter was diagnosed at 8 and it was the very very best thing I have ever done. She is the sweetest most empathetic loving girl ever & like you I used to watch her struggle with things & meltdown after long days.
After assesment I changed things up slightly. Calmer room (toys in a toy cupboard & brought out one at a time depending what she wanted to play)
Room painted a calm colour. Easy chair for naps after school.
Noise cancelling headphones for when I HAD to take her to the shopping centre or supermarket.

Let her touch materials of clothes & say yes or no.

Quiet time after school.
A plan for the week made & kept to.
Forewarning of events or days outs or holidays & explnations.
Fwiw I didn't stop any of these things? Just told her about them in advance & explained timeline etc.

What a difference, almost overnight the change was remarkable .

The autism society helped me to apply for dla for her & it's been such a boon. Over £400 a month. She now used that to pay for clubs & organised social activities - easier for her.
And for taxis - she doesn't cope well on public transport (smells, noises, strangers bumping her etc)

It is literally the best thing I have ever done for my child as a parent.
She's now a young adult.

Your husband is being a grade a twat with his "don't label" bs. Fight him on this. Fight for her.

Particularly as a girl. Women are taught so young to be people pleasers, she will end up masking all the time which is bloody exhausting & draining for anyone.

Non diagnosis does not mean it's not real it just means that neither you nor your child nor her school gave the information abd/or tools or additional funds to properly support her.

Autism sounds a possibility. Talk to the school SENCO about your concerns, if you haven't already. If you choose to go down the assessment pathway the SENCO's input is likely to be invaluable (if they are good at their job).

It sounds to me that it is worth pursuing a diagnosis. Bear in mind that waiting lists are quite long so it is best to get on the list sooner rather than later. (If things turn around during the wait you can always choose not to pursue a diagnosis - not necessarily advisable though).

It can be really hard when a partner doesn't 'see' the issue or doesn't want to pursue a diagnosis. He may well just need to have a little time to get his head around what you are saying. I found this with my DH before our son was diagnosed with Autism - it always took him several months to catch up with my thinking. I think it is because mums are generally more in tune with these things and often spend more time with their children.

It has definitely helped my son being diagnosed - better understanding of his needs, he better understands himself (positive for mental health) and gets more support at school. It is definitely not a label for him.

DD wasn't diagnosed in primary but she was labelled as fussy, difficult, temperamental, naughty and odd - and I was labelled as a bad parent. She was diagnosed in secondary and she's so much happier knowing why, and she gets support rather than just told off or sent out to the corridor or whatever rubbish they did in primary that just made everything worse.

Get her assessed. What you describe sounds like my DD, she was diagnosed at 15. I'm so sad that she didn't get diagnosed earlier as it would have helped her so much, especially in the early teens when it becomes much more problematic for girls.

My son has ASD and shares some of those traits.
He also has meltdowns when overwelmed, has sensory needs that he meets by chewing objects, can't handle certain textures of food and manages social interactions by close observation and mimicry of others rather than on instinct.

I would definatly recommend starting the process to get your daughter assessed. The reason I say this is that it can take several years to get assessed on the NHS and a lot can happen in that time.

Even if it feels like her differences are quite subtle at this point, a few years down the line, this may not be the case. The behavioural demands of school will increase over the years and her peers will become more emotionaly complex and more difficult for her to understand. If she does need a little extra help and understanding down the line, you will want to have your ducks in a row.

If she doesn't have ASD, she may grow out of the traits while she is waiting for an assessment and no harm done.

If she does have ASD but is able to manage fine, the assessment will be a tiny part of her life which effects nothing. Its not overly intrusive (a couple of appointments over a period of a few years) and there's little stigma attached. She can do with the information what she likes but many adults find a diagnosis liberating.

If she does have ASD and encounters problems later on...the fact she has a diagnosis will be invaluable. My own son did not cope well in school after the first few years. Because he had a diagnosis in place I am able to access Disability Living Allowance which makes it affordable to home school him. If and when he goes back, I have a letter from a psychologist in support of a reduced time table and accomodations.

If I had waited until there was a crisis- it would have been much more difficult to access the help he needs.

Thanks, this is all really helpful. How do I go about getting her assessed? What is the assessment like?

Assessment on nhs can take years so start now. Asd can get very difficult using adolescence or when school pressure ramps up.

You’ll need to be extremely pushy and assertive to get assessed. Write a list of all symptoms- sensory, what she reacts to or gets anxious about, what the reaction is like, etc.

Ask school SENDCO for a meeting and see if they’ll refer. Otherwise go to GP and be clear on symptoms- don’t miss anything or underplay anything. Don’t mention how kind she is- ridiculous misconceptions about asd are rife in the nhs and they might fob you off (as mine did, repeatedly).

Assessment: you fill in questionnaires, school fills some in, child has a chat with assessor in first instance. But honestly- it can take 2 years to be seen in some areas of England at the moment. And then you have to fight for any support in school after. Well worth starting now.

I think it depends on area, but where I live you can refer your child yourself. Google the name of your county and autism assessment and see what comes up.

Otherwise it would be either going through the school or speaking to her GP.

Oh and when you speak to school or gp. Describe her worst day. You never know when you'll get a worst day and as pp's have said it can get a lot harder during puberty as emotional needs differ & teens become more complex.
I found the picture book "all cats have Aspergers" helpful for us to look at together. Really helped my daughter understand x good luck OP

Ps fight hard. ASD is notoriously difficult to get seen for & diagnosis for girls difficult but so so worth it.

How do I go about getting her assessed? What is the assessment like?

I'm in Scotland so it might be a bit different. But heres how it went for me:

The school noticed some stuff and advised me to get a diagnosis.

I made an appointment with the GP and explained what the school had said to me.

The GP made a referral to CAMHS (Child and Adolescent Mental Health Service). We got put on a waiting list for an initial appointment.

1st appointment with CAHMS. This was a basic screening appointment to see if it was worth procedding to a proper assessment. They talked to me about his behaviour and the problems at school and they talked to DS a little and observed his general behaviour at the appointment. They decided to go ahead to a proper assesment and produced a short report to this effect. (I got DLA off the back of this report so well worth having in its own right.). Back on the waiting list.

Zoom call with CAHMS- they talked to DS a bit and then to me a bit.

DISCO meeting with CAHMS. No idea what DISCO stands for. It was less fun than it sounds. They talked to me a bit and then played some card games with DS.

At some point they spoke to the school. I think normally they would observe the child at school but as DS was home schooled by that point, they just had a chat to his old teachers.

Then they sent me a massive form to fill out. This covered loads of stuff about his birth, his development as a young kid, how he is now. I got to choose whether to do this by filling out a form or by interview. I chose the form so that I could think through my answers and refer to old nursery reports.
Many people would prefer the interview format as the form really is very, very long!

We got a phone call confirming he has ASD and a very helpful report to show to the school/DLA people.

A little while later we got a phone call to see how we were doing. As DS was a pretty happy kid and everything was rubbing along nicely, they closed the case at that point.
I had some concerns about if/how to reintegrate him into school so they wrote a lovely letter in our support pointing out how much better he was doing at home and recommending a reduced timetable and accomodations if/when he goes back.

Sounds like a lot but it was spread out over several years so a very very small part of our lives overall. From DS's point of view it was a couple of appointments with a doctor. No biggy.

I have a nephew who is neurodiverse. Diagnosed when 5 and able to have the support needed, now in his twenties.

I agree with the suggestion of an assessment and what you describe is from a loving parent.

I probably thought like your husband. Our dc is socially awkward, obsessed with dinosaurs, hums a lot, can't sit still, poor concentration, very tactile. The school suggested we get him assessed. He has been diagnosed autistic age 9 this year.

It's been great since the diagnosis. Loads of supports from the school, report and meetings on what they can do to help, social groups with neuro typical kids, movement breaks, therapy putty, pencil toppers, wriggle cushion.

He also feels so much better in himself. I bought him some books about autism. They described kids with similar symptoms in a positive way and gave examples of famous autistic people. He said it explained why he felt different. Now he can explain it he can cope so much better. He can say how he feels much more easily and his siblings and teacher are able to resolve and prevent issues. The difficulties he had in school have all but gone.

The empathy thing is a red herring, it doesn't rule out ASD.

I have ASD and it sounds like you have described me at your daughter's age.

It drives me mad when I see posts on here about one parent not wanting to pursue diagnosis because of being "labelled". I was diagnosed mid-30s following a catastrophic burnout, which may never have happened if I'd had help before. I've not been the same since then (six years now).

I can look back and see how badly the lack of a diagnosis has affected me and it does make me so sad. As for being labelled, I have always been labelled "weird/an outsider" anyway. I have beaten myself up for years about not being able to do things like other people, believing I was at fault in some way. I have always been told if I could try harder, I would be able to do things that I now know are because of ASD - and no, I can't just try harder, because my brain is different to an NT brain!

I agree with @beachcitygirl , the don't label thing always seems to be associated with mental health or neurodiversity.

I think some people fear beng labelled as they come with stereotypes for example Autistic (aloof with sensory issues) ADHD (hyper and forgetful) ID( can't learn quickly enough)Aspegers (yes I know the name is changed: obsessive with no friends) so they say no label- that is not me/ my child.

Well no- because people are not tins of beans.

These stereotypes don't reflect a person's individuality or personality at all.

A person with ADHD/Autism/ID/Psychiatic Disability is an invididual knowing you have any of these conditions is not a label- it is information so you can have the best life you can.

Which we all desrve

Deserve

FFS !

I love this thread

Thanks so much to everyone who has commented! What sort of things did school put in place to help? I realise every kid is different but...

They can put things in place before diagnosis to meet your child’s needs. After diagnosis, there are a couple of routes such as EHCP.