Struggling with diagnosis of asd

[TisforTucan]

We are currently waiting to see speech and language, I suspect DC has autism, DC is 3 and starts school in September. Will not use potty (holds wee in, won't use potty).. quite strong willed about it too and recently after having DC3 I am panicked.

Although we have no diagnosis as such I am struggling a bit with it, DC is becoming more obvious they can't speak as well as your average 3 year old and is quite different (like of we're out with friends, DC likes to stick with us for the majority of the time and won't speak to people and melt downs when they happen are quite chaotic).

I feel like I constantly have to defend DC or explain, like people are thinking there's something wrong when DC gets overwhelmed or doesn't answer them.

I'm also mourning a little bit that DC isn't like my chatty eldest, I love DC so much, they are amazing and so clever, surprising us each day but the fact they are unable to talk properly in sentences or have conversations makes me a bit sad, when I see my family and friends children the same age too.

I know I shouldn't, how do I get over this? We just had another baby so I feel like we let DC down too with everything being more busier now, I feel like shit mum, especially with the potty training.

for us a younger sibling was a godsend. We went through all the stages again and it helped. Mind is adult now and so so loved. It’s an unusual life but not a sad one.

It's very hard when DC are so little, to know what they will be like when they're older. DD1 was quite delayed at 3 and used her own language to communicate her needs. She did pick up speech and although she uses words interestingly, she talks well.

Your children (all of them) will change a thousand times between now and adulthood. It's an amazing process, and although DD1 is the same in many ways as when she was 3, she has changed constantly as she's grown. Whilst her needs are complex, she's fascinating and captivating.

In fact, all my children are. Two have ASD dx, with one still on the waiting list. They are so different to each other.

@Okshacky This is all me, I just worry for them about school and everything and whilst I know so much were still in the dark. DC is an amazing kid, we'd never be sad with them around ☺️

@Lougle DC is using singular words and very rarely uses sentences (if so they are broken, so want drink or drink please). Lots of repetition so I'll say look it's a tree, and I'll get 'tree' and I'll say what colour and DC will say 'colour' ect. I thought this was just toddler learning but it's become more obvious. Surprised us everyday though as we get random sentences occasionally.

Melt downs are more upsetting for me, as there's lots of self harming and DC gets really distressed now, finding it really hard to see them so upset when they can't communicate why.

Ah yeah I can definitely say this with my first born, they've changed so much but there's still the little independent cheeky 3 year old in there lol. I wouldn't change ds2 for the world, they're amazing and so funny, I just worry what life will be like for them.

Don’t feel like you let DC down by adding to your family. It’s not true. I had a new baby when my DC with additional needs was 3, about to start school in the September, and honestly it was so helpful being on mat leave and being able to go to all the Salt and physio appts, being there for the portage sessions, being able to go to all the paediatrician appts etc. In lots of ways it gave me more time for DC- it meant I was able to work on getting the EHC needs assessment and EHCP in place while I was ‘fresh’ instead of evenings after work…

Also, my DC had significant speech delay and while it was really important to work on all the Salt activities and games for DC, it was really fun to do them with baby too from about 6 months, and contributed I think to baby’s being an early talker- so baby benefitted too :)

I personally feel it can't hurt to treat "symptoms" as they're young before diagnosing them with autism, etc. As pp said, they can and do (for some) outgrow delays. Duw to this, I'm not sure full early diagnosis is best.

What are his issues? Speech, etc. Then treat them as you're already doing with SLT, etc. Don't worry about 'autism', etc unless he exhibits all the behaviour that meets the threshold.

P.S: I'm autistic with autistic dc diagnosed at 12. We were successfully managing traits in an ND fashion before then and nothing has changed after diagnosis.

Did he show symptoms before you got pregnant?

Don’t understand the relevance @Chasingadvice

Is there any particular reason you use the pronoun 'they' for ds2/DC, rather than 'him'? I assume you are referring to a boy (singular) but I am a little confused trying to work out your posts.

You could defer their school start, being a summer born?

When my son was showing signs of autism it became obvious to me that sending him to school aged 4 and a few months was going to be disastrous. Speech and language was way behind, still in nappies etc.

We deferred his school start and he toilet trained a few weeks before he would have started school. The extra year at home was so beneficial. Diagnosed with autism three months before he started school.

I was also wondering about this. Especially as you’re going to be at home at least for part of it. It may do him good to have a little more time to develop at his own pace, and the other positive is it’s a relatively frequent practice for a summer born, so you wouldn’t be singling him out

When DD1 was small she used to use her own language. She'd say 'I want bowleat' ("I'm hungry"), "it pink and it go weeeee" (I want to go on the slide), "chicken with handle" (satay skewer)."

Now she's 17. She talks in the 3rd person "DD1 go to Grandad's?", often. She doesn't use correct syntax for her sentences. But, she's understandable and can talk about lots of subjects. She often forgets the word for something but says 'whatever that word is...'. Her pronunciation is not always accurate. It gets worse if she's upset - her sentences get shorter and her words get more muddled and harder to understand. We can usually work out what she's trying to say, though.

Another one saying might be worth looking into deferral. My DD is a summer born and has had a bit of a speech delay and selective mutism. She's very chatty at home and her confidence is growing, but I think she'll really benefit from an extra year to grow into herself.

An extra year could buy you time in terms of everyone feeling more ready. And possibly being able to access more support in that extra year.

Yes - do defer, not only for academic reasons but social ones too.

Accepting an autism diagnosis is a lot. The first thing you have to confront is your own internalised ableism, in my experience. Which in my case was a shock as I would have stood up in court and sworn I had none.

Then - everyone else’s. Teachers, doctors, all sorts of people who ought to be on your side, who believe all sorts of outdated crap.

I’d really recommend Neurotribes by Steve Silberman. It’s a hard read through the 1930s but a necessary one. Flick past the Victorian gentlemen at the start, though, that bit is almost unreadable.

Sorry no practical advice to offer, but I have a DS who was diagnosed at a similar age. It’s a grieving process OP, you mourn for the child you thought you had, and for all those hopes you had for them. It takes a while and it’s very hard, guilt ridden too, but there is an other side, it will get better.
Your child is ‘different, not less’. It’s just a different reality, a different way of doing things.

My ds1 had a speech disorder when he started school and was incredibly strong willed. We were lucky that he did not have meltdowns but I suspected ASD. His diagnosis came much later and the speech came later too. He has now got a lovely group of friends, is studying for 4 A levels and is talking about going to Oxford Uni. There have been struggles, and meltdowns, sensory issues, social issues, but with ASD there is such a huge array of difficulties and strengths.

I agree with a pp to tackle the current difficulties you face and celebrate the strengths.

We had ds2 and then ds3 before we had the diagnosis for ds1. It actually worked well as ds2 and ds3 are much more similar and social together.

Didn't want to r&r.
I was the same, DS was 3 when diagnosed, I had just given birth to DC3, everything was crazy and I felt so alone. DS was (is) delightful but had his own language, wouldn't play with other kids, preferred adults, etc etc. I had to give up my job to stick to the therapy schedule, we counted coins to buy food. It was a hard time and I felt trapped, lost, sad a lot.

Fast forward to now, DS is 14, loves playing his guitar, never stops talking, and is a lovely kind person.

He has been at a specialist school since he was 8, and it has been amazing for him.

I never could have predicted he would have grown up to be who he is today!

My point is, go ahead and grieve your hopes. It is an important part of accepting your family. And try not to worry to much about what others think. Your friends will walk alongside you, even if they don't always fully understand.

Sending hugs

Deal with the present don't focus on the future. Get the right support in place - speech and language is a good start. Don't force potty training my son was also diagnosed with gdd and wasn't dry till 7. He's fine. Don't expect/push your child to meant 'normal' milestones go at their pace. Whatever they achieve is normal/fine. Manage their environment try to make sure you don't expect more than is manageable for them. Get support in place at nursery /school, speak to senco, head/manager and get a Sen plan in place for your child. Advocate for your child in public don't make them feel bad or negative about themselves they are who they are. Try educate people on the differences rather than apologise.

It takes time to get use to and the unknown can be scary. Read lots of books . There's some great support groups on Facebook. Avoid anything that talks about making your child appear more normal. Your child will thrive better if they can be themselves . Masking behaviour causes more anxiety in the long run .

With regard to pursuing diagnosis the sooner the better as it can take years (unless you go private) I started process when ds was 2. Speak h and language therapist and hv referred him jointly to paediatrician for appointment he was then referred to pathway. The whole process took about 18m I believe it can be double that now. Nursery/school can also refer or you can go gp to see what process is in your area.

With regards to education he may need support in school or a Sen school this is easier to attain with diagnosis and ehcp. So it's better to be ahead of the game. A formal diagnosis doesn't change anything about your child it gives you a place reference and helps get them the support they need.

Thank you everyone for some really lovely replies, will try reply best I can as I have a newborn glued to me.

I thought about deferring him, it's the most sensible option especially with potty training (I did ask a mw specialist to come help twice re the potty but she's not contacted me). I feel a bit sad about it as it's a special time so I've been putting off thinking about it, we've got an open day on Monday so wondered about going and asking about it (DC would be part time).

To answer DC has sensory things going on, although has over come alot of them, including a big one which was water. Gets over stimulated quite alot (people who aren't in our 'circle', parties, loud places ect). DC stims quite alot.. grinds teeth, hits self when excited ect but most recently self harms when distressed so will rip chunks out their arms/face by scratching. Lastly the s&l is obviously delayed, DC can speak but it's not selective mutism, will only speak to people we know, won't have active conversations ( ie we had a class today and DC didn't want to go but all we get is a no or sad, we can't get an actual conversation).

DC as well I'd say is not as mature as children their age (I know 3 is still a baby, I tend to baby them too much) but they are extremely sensitive and this can be quite difficult when they don't understand why you are doing things (like saying no lol).

@blueshoes I am trying to keep my posts a bit private, but on 4 hour sleep with newborn so probably failing to do so lol.

@Righthandman Thank you, that's a really good point actually and I did think having baby would perhaps be a kick up the butt for DC (in the sense they are going to try and work a bit harder to gain our attention). I am really fortunate, I don't have to work right now as I've been studying so I can balance between the two.

@justprance Thank you, that's lovely to hear about your son and other posters children too. I don't worry about the future too much as DC will have all our love and support it's just how others will be with them, as someone who was bullied as a child, I worry kids will pick on anyone for being different these days and DC is such a sweet, caring sensitive kid.

@lorisparkle It's really lovely to hear so many positive stories and about your son. I think the hardest part is not knowing, and everything is so slow to get into motion.

Feels really hard right now as well with the not speaking aspect, we get daily meltdowns as DC can't tell us what they want. Fingers crossed we can get help soon.

@weirdas Thank you, our school is really good it has a family room so it's quite supportive with families and outside the school, DC goes to this currently with me and will integrate with it when they start (same member of staff). This staff member too is really supportive and knows whats going on and assured me if we get a asd diagnosis the school will working with us in supporting DC and helping them settle. I think

DC is at a point where we could manage mainstream but if things changed especially with the hitting it might be a bit more difficult.

What a great post. Yes, as a part of my journey of acceptance (wanky as that sounds) I had to get over my own ableism.

Unfortunately, it is everywhere and family members loudly disagreeing with me “labelling” my child has damaged relationships a lot.

Although I still have days when I wish my son didn’t find things so hard, I have never ever wished that he wasn’t autistic. He has a brilliant brain and such a unique way of seeing the world. He’s doing great at school and deferring meant that he stood out less, socially. Although that will change as he progresses to KS2 I’m sure.

My main reason so far is that I can't send DC in nappies. Were trying again today and I feel like giving up already, fighting me constantly about underwear.

If I'm honest I don't really want to keep DC at home, I think it would do them really good to be in school, apart from not wanting to speak to others, DC2 loves DC1 and joins in games with friends. Part of me hopes it would help the speech a little bit.

I might have no choice anyway, I actually don't know how deferring works, our school has January intakes so we just missed this year but maybe they'd let us wait until then (fingers crossed we will have sorted things with speech and language by then).

I spotted it first and DH was on the fence about it, then the stimming was a big thing, I thought maybe SPD. My parents took a while, it was a lot of they are still a baby ect. My in-laws are more older and so my MIL brushes it off and I can't really talk to her and my FIL we havent told, I can't say how he would be.

You don't have to defer if you don't want to. It takes a bit of confidence in your plan for what to do instead to be honest! Deferral may or may not have helped my DC - benefits of hindsight etc - but what happened for us was DC went to school as planned in the September, and then repeated the Reception year at another school that was a better fit the following September. DC continued to be educated 'in a cohort one year below DC's chronological age', as the official wording says, until y4 when we had another school move. If you end up getting and EHCP in place, lots of options are possible. And it may be easier to go through the process of requesting an EHC needs assessment if your DC is at a supportive school.

About nappies - you absolutely can send DC in nappies. School cannot refuse to take a DC because of this. They also cannot call you to come in for all nappy changes. The ERIC website has helpful information about this. My DC was using nappies til 7.

I was in your position this time last year with my youngest DC and nappies. Youngest DC is stubborn as anything and awaiting assessment for ASD partly due to concerns with toileting. But as part of the build up to starting school we talked about toileting and suddenly it just clicked that using the toilet at school was desirable. I wish I could say it was my perseverance and skill at toilet training but youngest DC literally just decided to get on with it in mid-August!

My child is now a teenager and was diagnosed at 3. It was hard at the time and tbh I think a part of me will always struggle with DC having struggles with things that others don’t. He was a late talker but has made up for it since Meltdowns eased off due to a combination of me noticing triggers and his communication improving.

I think it’s very normal to go through many emotions when on the diagnosis pathway. Realistically as much as we love our children none of us parents to be on that diagnostic pathway and in our case subsequent diagnosis because we don’t want our children to struggle in life.

At the end of the day I still when I look at DC see a funny, intelligent, kind, great fun teen. I am not in UK and here it’s more flexible with school starts. So you can start child between 4-6. DC stated at 5 and would be one of older ones. This helped DC big time because the other children’s social skills are more advanced than DC’s especially now that DC is in secondary school.

Sounds like you just described my daughter - will she go into reception or straight into Y1?