Any parents with ASD dds out there?

[Supersares]

Hi

Are there any parents of ASD girls out there?

Our dd7 has just had her EHCP approved as has concentration issues at school. At home her main issue is not being able to fall asleep at night.

Her class teacher has said she suspects dd has autism. I’ve looked it up and now believe it’s more than likely she does. Currently waiting for an official assessment through our LA.

This realisation has floored me. I’m worried about what this means for her future. She has a female 2nd cousin who is 18 now and has limited social skills and virtually doesn’t leave the home.

Im not sure how I can ensure she is happy and how to deal with this, any advice please xx

The most important thing is that your dd gets the help and support she needs, and it's good news she had her EHCP approved! If she has ASD, that doesn't mean she won't ever be happy. It might be though that what makes her happy is different from what you thought would make her happy, if that makes sense. My dd hardly leaves the house, and she has some co-morbidities alongside ASD that worrie me, like OCD and anorexia, but she also has many moments of joy and many gifts and talents.

If DD struggles to fall asleep, you could request a referral to paeds/a sleep clinic/CAMHS (whichever one has the shortest waiting list in your area and will prescribe melatonin) to ask about medication to help with sleep.

Does DD’s EHCP accurately represent her needs and the provision she requires? A good EHCP is worth its weight in gold.

Diagnostic assessments for ASD are via the NHS (or privately) rather than the LA.

I haven’t answered your poll because in not sure what you mean, sorry.

Don't panic, OP. There are lots of books and resources that you can learn from. One I found useful is "Smart But Scattered".

It's a good idea to look into getting melatonin. That was a game changer for us (DD was prescribed it at 7 and has been taking it for 5 years). It's taken a lot of effort to get her sleep into the normal range but we got there.

Sorry @StrivingForSleep I’m relatively new to this. DD’s ND testing is through BeeU which is our local NHS and not the LA.

Your username is very appropriate btw 😃

I’ve previously asked our GP about melatonin and she wouldn’t refer on to a paediatrician, kind of annoying and gave me antihistamines for dd. I’m not sure they’re a long term solution or would even help. The obvious answer is to get her more active to burn up calories. She’s not an overly sporty type though as isn’t a confident mixer with other children. She’s enjoying martial arts which is good, it’s a battle every week to persuade her to go but once she’s there she enjoys it.

School have been good in applying for the EHCP on our behalf. Was really happy as they’ve also arranged the ND testing.

I guess the issue I’m struggling

is that friends and family I know with autistic or ND children are nothing like our DD. So it’s hard to speak to anyone I know who can relate to the situation we have with DD.

Many thanks for helping me feel not so alone 😍

The assessments will be done by a paediatrician probably (in some areas may be a psychiatrist). They could prescribe melatonin. You'd then have to persuade the GP to take the prescription on (that's what we did).

Alternatively you can buy it online.

Most GPs won’t initiate melatonin. Often, a referral is necessary. Did you try the antihistamines? They are sometimes used to aid sleep long term. Most commonly Promethazine but sometimes others. Worth trying in my opinion. Sometimes more activity works (DS2 sleeps fine if he gets enough exercise) but it doesn’t work for all (I have 2 DC who it doesn’t work for). If social interaction is putting DD off exercise, would she do something solitary? For example, a trampoline or bike riding. Or would she cope with individual sports, such as swimming or climbing? BeeU is a CAMHS service. They can prescribe, but you might want to ask for a referral elsewhere for sleep medication because the wait will be long.

I have 3 autistic DC, 1 also has ADHD, and I am autistic and have ADHD. We all have different presentation. The username is my life - sleep is hard to come by!

@StrivingForSleep Does it help you understand your dc’s with being ND yourself?

Can I ask what were the early symptoms your dc’s were ND?

Our dd loves trampolining yes! Also her scooter but I’m not sure that raises her heart rate and thus tires her out much.

Right now she’s sitting on the rug sorting out her Pokémon cards by colour. Quite happy and calm so a good night so far…but won’t fall asleep until around 10:30 🤦🏻‍♀️

It is difficult to know but I would like to think so!

DD2 is an adult now. Her actual diagnosis is Asperger Syndrome - diagnosed before the change to encompass all under ASD. She was precocious in many ways. Language very advanced but her social interaction and communication was atypical. She has perfectionism and the anxiety that goes with that - this was present from a very early age. Some sensory needs. Then there were subtle signs such as struggling with imagination, e.g. she appeared good at role play but she replayed the same real life situations word for word rather than participating in spontaneous role play.

Teen DS2 was diagnosed with ADHD last year and ASD a couple of months ago. He managed well until puberty when his impulsiveness and risk taking behaviour skyrocketed. He has always been hugely sensory seeking, which was managed well as long as he got enough exercise. Always needed structured and routine. He is outgoing. Craves social interaction. But sometimes it goes too far - e.g. he doesn’t always know when a joke has gone too far or where the line is (bane of my live last year was a teacher who didn’t understand DS2 needed clear boundaries and having ‘banter’ and then expecting to be able to flip a switch doesn’t work for DS2).

Teen DS3 and was diagnosed with ASD at 6. Slight speech delay which was originally put down to having a brother who would do the talking for him. Huge sensory needs including difficulties with food. Significant social difficulties. Anxious. Always had special interests, needed structure, displayed rigid thinking.

They have a variety of comorbidities between them.

I was diagnosed with ASD in 2019 and ADHD (and cPTSD) last year.

I also have DS1 who doesn’t have ASD or ADHD but has other complex needs and is my child with the highest needs.

If your dd goes to bed at 10.30pm, does she then sleep for at least 8 hours? Everyone in my household always went to bed at 10pm, asleep by 10.15/10.30. DCs get up at 7.45am, so 9.5 hrs sleep. My ND children also needed co-sleeping to go to sleep and stay asleep until they were double digits, so a common latish bedtime was the natural option. I never found that stressful. I thought it was nice for everyone to have the evening together. Could you not just work with her rhythm, so that 10.30 is normal? Most things with ASD etc are only stressful if one has previously adopted some rule or got used to a routine that their behaviour clashes with, if that makes sense. Once their inner rhythm is the rule, things often fall into place peacefully.

@NellyBarney your bedtime arrangement sounds good and works well for you.

DD is 7 and recently she’s not been going to sleep until after 11. We have to wake her up every school day morning. Presently I’m bringing her porridge in bed to eat at 7:45, then she’ll try going back to sleep. It’s a bit crazy. I’m looking at her screen time as noticed she’s either watching tv, xboxing or using my mobile more often …I’m sure there’s a link. Going to try and dial back on this from today.

I agree that if we go with the flow and accept her sleep habits it’s less stressful. I do miss time alone with DH so we need to make sure we fit this in.

Yeah, I'm not claiming getting my dc up in the morning is easy. They, too, have breakfast in bed, or when they were younger, I just carried them to the car and they had breakfast in the car. I put school uniform on in the evening, after bath, to save time and stress in the morning (they have a diagnosis of dyspraxia, ADhD, ASD and PDA). I don't know how your dc react to screens, but for mine, I think especially for ds it's his only joy and source of calmness. People have different opinions and experiences, but I don't restrict it (during the day. We do have a set time for screens and lights out at night, and I sleep in his bed so that he doesn't get up to switch anything back on). I put a lot of effort into getting him to engage with some quality time each day away from screens, like cuddle and reading time, but screens are his life. He's also doing online school, and he learns so much more from videos than in real life. E.g. sitting face to face with a real person just causes him extreme distress and anxiety, especially if they say anything critical, so he can't engage with classroom teaching. Through a screen, it's still a social interaction, but filtered and distant enough for him to cope.

We've just been away for a few days and had to cook and freeze individual mashed potato portions for DC for breakfast as she can't tolerate anything else and otherwise gets hangry and awful.

This is why you need other ND parent friends...

@Needlenardlenoo

I know exactly what you mean with food. DD is very particular with what she eats and reluctant to try anything new.

So her diet is limited, but she does eat veg, likes cheese and her main meals aren’t too bad although they are only about four different protein components she’ll eat. Over time I’ve been to introduce new foods, for instance she’ll eat burgers now (not the best I know but at least it’s different).

DH and I are pizza lovers and can’t believe she won’t touch them!

She ate a couple of Doritos the other day and it was like a hurrah moment for me just because it was something different.

Last year’s holiday was difficult as I could see all the different families and the kids tucking into all sorts of things and DD would only eat the beige food.

I need be a bit more relaxed and stop trying to compare her to other children as they say comparison is a thief of joy and as an ASD parent that’s definitely the case

That is definitely the best approach - don't compare to others (but do celebrate things she learns to do).

MIL (who sees DD a few times a year due to distance) always really cheers me up by pointing out improvements!

I too have a DD who is autistic and strongly suspect ADHD who wasn’t diagnosed until end of primary school but we knew and the gap in her social skills really got noticeable aged 8+ but she’s very academically able which masked her difficulties at school for many years. We just saw all the behaviours at home. It’s also very common for one or both parents to come to slow realisation that they too are also ND. You do need to let go of comparisons with others which is very hard to do and go with their strengths whilst gently pushing them to keep expanding their experiences but at their pace, whether it’s food or activities I think. Both my DDs are very different but have underlying similar traits just process their experiences differently. Id focus on what your DD is good at and build on that. Trampolining is great for raising the heart rate, we too used antihistamines to aid sleep plus audio books and no screens two hours before bed. Lots fresh air and exercise plus the equivalent in down time at home too. My DD loves trying new craft stuff following tutorials on YouTube the latest is crocheting she’s taught herself which is brilliant mindfulness but she’s a teen now. She uses her hyper focus to do stuff like this then in a few months time will be bored of crochet but will move onto something else all the while growing her skills.

That’s so encouraging to hear your dad is enjoying different crafting @SpringIntoApril

Dd has recently started keeping a diary and writing short stories. She’s very creative with a great imagination, I’m not sure if this is an ASD trait or not. But yes you’re right, concentrate on the positives. As all parents should do regardless if their child is ND or not. She’s has a good sense of humour too and a lovely singing voice.

Hyper focus is intriguing and I’m sure could be an advantage in some situations. Strangely, I noticed my mum hyper focusing yesterday…light bulb moment!