If this is Autism?

[Aswad]

I know every child develops at a different rate
I know not all Autistic children display the same traits
I know I should see a specialist (we’re on a waiting list) but I really need some answers, please!
My daughter is almost 2 and a half
Has never pointed
Doesn’t look where/when we point
Doesn’t speak (not even mama/dada)
Doesn’t imitate our actions eg clapping, waving, pointing
Doesn’t wave hi or bye
Was a late walker? started walking around 16months
Doesn’t answer to name, never has
Randomly laughs to herself!
Occasionally walks on tiptoes. Maybe one very couple of days for about 2/3 steps
Chews on clothes . Usually the collar
Puts things in mouth
Hates having teeth and hair brushed. Like HATES it
Is good with food I make so no issues around that. Not great at nursery though
Instead of pointing she’ll take me to what she wants e.g her cup of water. Will bring me what she wants occasionally eg iPad or a book
In nursery no parallel play, will only play by herself

Loves being read to. Will sit still if new book
Happy child so will laugh if you smile at her
Likes being chased but won’t attempt to chase us
Doesn’t shy away from affection. Loves being held and cuddles
Hearing fine as understands about 5 words and will respond to those
Sleep wasn’t always great but when turned two started getting better and now sleeps 8 hours straight at night and 90 mins during the day. Which is not enough when combined

Please give me your thoughts. Did any of your children display these signs? Did it turn out to be Autism/delayed development? Did they outgrow any of it?

Hey there. Adding another voice to say it may well be autism but be assured that if it is, it really isn't the end of the world! It took me about 3 years to get my head around my son's diagnosis (ASD + ADHD) and now I'm just so proud of him. Diagnosis helped us to understand and help him better (and he himself). He's now in a more suitable school for him and is absolutely thriving (has just skipped an academic year ahead) with a few great, strong friendships that he's developed and maintained for 2 years now (he's almost 11). He's an absolute legend this kid.

Is seeking a private assessment an option?

Agree with above advice re signing (Makaton), lots of singing and reading to your daughter. I understand how hard the uncertainty is, but she really will be fine with all the support and love you're giving her. All the best.

Hi op, not much to add as you have been given so much excellent advice already.

I have a 17yr old ds with Aspergers, diagnosed at 8. He was a late talker but understood a lot. He was an amazing sleeper from the day he was born and such an easy baby. There are definitely no two children the same on the spectrum.

My dd is 9 and I suspect has ADHD. I myself was diagnosed with it last year when I was 41. Girls slip through the net so much as they tend to mask behaviours and many of the diagnostic tests are male centric.

I found it was better to look specifically into ASD/ADHD for girls as the guidance and advice is different but so are the subtle signs in some cases.

When assessing ASD you will be asked to fill in forms about your dd’s behaviours etc ( assuming that’s the route you go down ) and the advice I would give you is to start noting down all of the things that are worrying/concerning you as it’s often hard to remember them all when in a clinical setting and of course things change over time.
We have a strong history of ASD in my family. Of 8 grandchildren, 6 of them have ASD, 5 boys and 1 girl, all diagnosed at various stages of childhood from 2-14.

Google your local camhs. Our area allows self referrals. I remember getting a HV round a couple of times and she was observed by someone more specialist in behaviour age 3. It went no where as she was too young and not obviously ASD as meeting milestones only a little behind average. It was so hard, really poor sleep and twice daily, hour long meltdowns. The ADHD was more obvious but only they won’t diagnose until age 6 in the U.K.

DD isn’t the reason I’m awake, melatonin really helps, but it was a long and slow transition to not waking us at least once a night. Mostly night terrors, almost every night!

How did you all come to terms with it?

Time.

Autism was on my mind early on. I probably started thinking about it between the age of 18-24m when he just wasn’t starting to talk (and having an older girl - ironically who I now think is also autistic! - who was chatting in sentences by that age I knew something was wrong).

I was terrified. I was desperate for people to tell me that he wasn’t autistic. I remember feeling total relief when a speech therapist wondered if he was just shy, aged two. He started preschool at three and they flagged concerns about his speech delays and behaviours. I remember asking them if they thought he was autistic but they were honest and said they weren’t sure.

I accepted every referral that was made for him. There isn’t much out there, be it from the NHS or the local education authority, but I didn’t refuse it.

I’m not sure exactly when I made my peace with it, but the delays in getting diagnosed helped, weirdly! It meant we slowly realised that he was autistic, rather than having a formal diagnosis thrown at us. As his communication improved, his rigid thinking became clearer. I remember him having a huge meltdown on holiday because he wanted to use the umbrella he always used at home, hundreds of miles away. My husband said “why is he doing this?” and I said “autism”. It was the first time I’d said it out loud. He’d also taught himself to read aged three, and now he’s five he’s genuinely gifted at reading and maths. His mental arithmetic skills are better than mine.

There is an amazing community on social media which has helped me loads. They put a really positive spin on autism as an identity and a culture. I found podcasts really helpful too. This road can be a lonely one so I’m always grateful to find other parents who get it. I can recommend some if you like.

I remember reading something that stuck in my mind which helped me to come to terms with it- “autism is not a death sentence”

Sounds harsh I know but it put things into perspective for me. There are worse things out there.

I found that ds’s dad was in denial even though he was at the diagnosis meeting. Men in my own experience have found it much harder to come to terms with.

@FunkyFunkyBeat
Wow that’s amazing. I think it’s rare in the U.K. to skip a year? he sounds exceptional😊😊 And the fact he has a solid group of friends is great, I worry so much about her social development too. Will she be a loner? Will she be bullied?

@Zoflorabore

My dd is 9 and I suspect has ADHD. I myself was diagnosed with it last year when I was 41. Girls slip through the net so much as they tend to mask behaviours and many of the diagnostic tests are male centric.

That’s crazy it took 41 years to get a diagnosis! Yes I keep reading girls often go undetected as they’re able to better mask their Autism? Also there’s a perception it’s normally boys that have it so again girls get overlooked which is really not fair

@ShastaBeast oh God my one wakes screaming about 80% of the time! She wakes crying. Is it night terrors? I think I’ll look into the melatonin if it doesn’t get better. She had a three hour nap and surprise surprise was up for three hours!

@Haworthia
I’ve mentioned concerned to professionals but nothing to family as I don’t want to worry them. You’re right, there’s a part of me that’s holding out but really when I look at it rationally it’s quite obvious. For me it’s the unknown. I hope she’s able to function perfectly well. Massive bonus if she’s gifted at something. There’s just no way of knowing right now

Some of the traits you mention are similar to DS at that age, some aren't. Our health visitor was also useless and said DS was obviously NT as he demonstrated the same behaviours at home and with his DGM who he spent time with weekly. We finally got a referral from the school nurse when he started reception and he got his ASD diagnosis at 7.

And the fact he has a solid group of friends is great, I worry so much about her social development too. Will she be a loner?

And, what if she was? As long as she's happy, that's what counts. Some autistic people are happy being "loners." Hell, some non-autistic people are.
If your child does turn out to be autistic and is a loner, please don't be one of those parents who is obsessed with the fact their child has no friends and push them into social situations they don't want to be in.

My son and daughter were diagnosed by two and a half. Your daughter sounds similar to my daughter at the same age.
You could perhaps use her love of books to help her communicate. I would label the things she likes. She might well learn to recognise the labels and use them to indicate her needs
My ds taught himself to read from TV subtitles age two but didn't speak until he was seven. I didn't know he could read until he used his magnetic letters to make words he then used his letters to make demands. It was pretty difficult when he went to school to explain that a child who could say single words could write sentences with perfect grammar and spelling without me coaching him. He used to write about his teachers and never complimentary. Even now he likes to write notes rather than speak when it's something he wants to talk about.
I taught dd to read by three by labelling stuff and she worked the rest out herself. It's hugely useful to have a way they can communicate cuts down on a lot of frustration.

I think it’s definitely a good idea to get her assessed but also just wanted to say it’s worth getting her hearing checked too. Even if she can hear a little, mild or moderate hearing loss would make it very difficult for her to learn to speak as she would be missing the sounds that fall beneath her hearing level. My daughter was lucky that she was given a routine hearing appointment due to another condition - we were sure she could hear fine as she responded to her name and had some understanding. But she was found to have moderate hearing loss due to glue ear. Since she was given hearing aids her speech really took off.
Whatever the outcome, best wishes to you and your daughter - she sounds lovely

You’re right, there’s a part of me that’s holding out but really when I look at it rationally it’s quite obvious.

It’s understandable, I did it too. Even though I knew he wasn’t like his peers from toddlerhood, and I found myself acting as a conduit between him and everyone else, helping him to understand the world and people to understand him (I still do!) I was still partly in denial I think. But eventually I moved into acceptance. It sounds wanky but it’s a journey I had to go on at my own pace.

As long as she's happy, that's what counts. Some autistic people are happy being "loners." Hell, some non-autistic people are. If your child does turn out to be autistic and is a loner, please don't be one of those parents who is obsessed with the fact their child has no friends and push them into social situations they don't want to be in.

That’s a great point @JanMeyer. One thing I’ve learned from the autistic community on social media is that autistic people don’t need to change to fit in with neurotypical ideals. If they don’t have many friends that’s fine. If they have obsessive interests that’s fine. Socially awkward? Fine. Different methods of communication other than speech? Great

Melatonin is hard to get from a GP but possible. A CAMHS psychiatrist can instruct the GP to prescribe. In some countries it’s sold over the counter but isn’t as regulated as medication.

Night terrors are linked to ASD & ADHD but it’s not easy to tell if they are awake or not. DD had them for several years so was able to tell us she couldn’t remember waking at all when older, even if she seemed to have snapped out of it and answer questions accurately. The night terror was lots of screaming and crying as if terrified. Later she kept screaming she was scared, she needs a hug etc but wasn’t aware of us. I used cartoon videos to calm her, or snapped her out of it by asking questions about factual things that had happened for example. There was no treatment offered.

My DH is ADHD, diagnosed mid 30s just after DD. He was told he’s at least borderline for ASD during the ADHD assessment by a leading psychiatrist. His Dad is strongly suspected of ASD too. Another psychiatrist told DH that daughters are unlikely to inherit ASD, more likely ADHD, but clearly this isn’t correct. But shows how little, even the experts, understand about these conditions.

What I find really hard about pre diagnosis is that you aren’t allowed to use the label to describe your child, even if it’s obvious and backed up by family history. Not allowed to access support and told off if you use the label on here as you aren’t qualified to know. Plus you doubt yourself and wonder if it’s something you are doing wrong instead. It can be very isolating.

[quote Aswad]@Crylittlesister
Thank you so much
My friend mentioned PECS and I need to get some cards
You’re right I am scared she’ll rely heavily on those and won’t want to speak. But I will definitely give it a try
I’ll check the FB suggestion too
Thank you for taking the time out to reply[/quote]
Do look into PECS. I used PECS with my 1:1 and used properly they will help develop language. My 1:1 was already using PECS when I started working with them and would use the pictures to shape out a simple sentence such as "I want" "playdoh" then would say those words. From there we moved on to saying the words without the pictures. It's not a miracle cure by any means but it can save a lot of frustration if they can communicate their wants and needs.

FWIW I think it's fine to grieve a little for the life you were expecting. It doesn't mean that what's coming is terrible at all, but it can be a lot to get your head around the idea that things will be very different. Fight for, and make full use of, all the help you can get. Don't just assume things will get better (that's a mistake I made with my DD). If things do (and they might) then that's wonderful but if they don't then it's better to have stuff in place.

I have a 7yo with HFA and a 2.5 yo with suspected ASD.

My 2yo sounds very similar to yours so it’s great you are in the system to get an assessment.

Both of my boys are wonderful but of course there are challenges.

Give yourself time and remember how much you love them and how much they love you and need you.

I know it sounds obvious, but I got caught up I’m checking stuff without just enjoying them.

Also, they’ll develop in their own time.

My older boy was thoroughly uninterested in any other children until year 2. He’s now genuinely one of the most popular boys in his class, takes part in school plays and assemblies, has play dates etc. He’s just HIM.

You’ll get there OP but it’s hard at times and fantastic at others.

What I find really hard about pre diagnosis is that you aren’t allowed to use the label to describe your child, even if it’s obvious and backed up by family history. Not allowed to access support and told off if you use the label on here as you aren’t qualified to know.

Well you could stop calling it a label for a start. It's a diagnosis, not a label. And whether you like it or not, it's true, you aren't qualified to know. You can think, you can suspect, but you can't know for sure. Only a thorough assesment can tell you for sure. And that's not strictly true about being unable to access support before a diagnosis. If a child is developmentally delayed there are avenues of support out there, even for children without a specific diagnosis yet. Though obviously it depends where you live, some areas are great for this, others not so much. It's not uncommon to have a child "in the system" for a few years before actually getting an autism diagnosis.

My DH is ADHD.

You mean he has ADHD. A person can't be ADHD anymore than they can be ASD.

@JanMeyer you’re nitpicking every single thing that’s being said. I know what @ShastaBeast meant and I’m sure you did too

And as for my DD being lonely, if it’s by choice then that’s absolutely fine. I just don’t want her being rejected by others and would rightly feel upset on her behalf

You have just described my DS15 at that age. He has developmental delay and Autism, BUT one thing I have learned during this journey is that every single child is different.

We were very lucky and got an early diagnosis at 2 & half.

Don't panic or make assumptions, be open to everything and everyone, is the best advice I can give as a fellow Mum.

Best of luck OP.

@JanMeyer stop policing the language I use about my family. I mentioned this policing language to a psychologist who couldn’t understand why people would do it, why I can’t use the word ‘mild’ to describe the severity of the impact of her ASD. It’s incredibly isolating struggling through this process, I’ve already been in tears today at how hard it was all those years of not being believed or taken seriously. The ASD diagnosis was a week ago, she is 10. That’s a long fucking time dealing with her behaviour with no support and not being able to access the support because we don’t have a label - and it is a label to me because of how society treats it as more important than the actual difficulties we experience. My husband and I can refer to him as whatever we like, he’d think you were a massive arsehole, and our daughter. To me she is ADHD in the same way a person is gay. It’s a big factor of her life and personality, she wouldn’t be her without it and I’m proud of her for it, no in spite of it. It’s not something she has and can be put aside or controlled with medication.

Until you get the magical report with those 3 or 4 letter you are refused and not taken seriously. Kids struggling with these symptoms, which are significantly impacting their lives, should be able to be supported while they are waiting. Parents may not be qualified to diagnose but they are qualified to understand when things aren’t as they should be and get access to the same support to manage difficulties.

NO ONE DOES THIS SHIT FOR FUN!

ShastaBeast

Re using the terminology 'mild' and 'label'

You can of course use whatever language you like, but you need to be aware that both of those terms, are very unhelpful in daily life for people who are autistic. There's a lot of reference online to what's acceptable terminology written by the autistic community in blogs etc.

If people who frequently interact with the child like friends, family, teachers, medics etc. believe a child's autism is 'mild' they will not be as attentive as they should be to the child's needs, they will expect the child to be very little different to their NT peers and won't immediately recognise when the autistic child needs help and support.
The result of that means the child is often put into situations they cannot possibly cope with and as a consequence overwhelm happens and the child either has a meltdown or a shutdown.
The people who were told the child's autism was only 'mild' are shocked at the child's behaviour and don't recognise it for what it is, then instead say the child is immature, spoiled and lots of other descriptions they would apply to an NT child.
By telling everyone your DD's autism is 'mild' you are really not doing her any favours.

A diagnosis of autism is done by medical professionals, in the case of children that's usually by a team, often Paed, OT, SLT and Ed Psych.
The diagnostic process can be very long and involves the child being observed in at least two settings. the team are highly qualified in their respective medical fields and do not give diagnoses lightly, if they feel there is any possibility that the child may not have autism, they will not diagnose.

By calling her medical diagnosis a 'label' you are again minimising and presenting it to teachers, friends, family, doctors etc. as something which is of little consequence.

Once more, you are really not doing your DD any favours by communicating her condition in that way.

Their perception of you calling it a 'label' is that it's of little consequence and shouldn't be treated seriously. Again, because you are trivialising her condition by using that terminology, your DD won't be given the support she needs because people won't expect her to behave much differently to her NT peers.

Girls learn the art of masking at a very young age. It's exhausting for them. By trivialising her condition to all and sundry by using terminology like 'mild' and 'label' you will be placing even more pressure on her to keep masking and when her mask slips, she won't have the correct level of support in place that she needs, because you'll have convinced everyone who should be giving that support that she doesn't need it.

You know what, use whatever words you want, but be prepared for people to tell you that you're using the wrong terminology. Fyi, i have Aspergers, and i hate with a passion people who call it a "label."
I'm not a piece of luggage, i and other autistic people are human beings. We have a diagnosis, not a label.
So I'll police whatever language i want thanks.

Oh, and people can't be ADHD. It's not like being gay because gay is an adjective. If your husband had cerebral palsy would you go around saying "he is cerebral palsy?"
No, probably not, because a) it's not correct English and b) it's incredibly offensive and reductive.
A person can be autistic, they can have ASD. They cannot be ASD, and a person can't be ADHD either. It's not nitpicking, just fact. Don't have a go at me, take it up with the English language.

You say ADHD is a part of your daughter and not something seperate, yeah i get that, but it's not the defining feature of a person is it? A person is more than their condition. Which is why i rail so hard (poor grammar aside) against people who say "my child is ASD/ADHD/SEN."
Autism and ADHD may be a big part of who someone is, still can't BE either of them though.

And as @BlankTimes has explained very well, calling it a label trivialises the diagnosis of autism and the process it takes to get it. Calling it a label means people will take it less seriously.

Autistic people are some of the best people you will ever meet. They are often very logical and they can’t stand injustice, lying Etc. They give honest opinions.

this stereotypical nonsense again. By the way, those with ASD who are nonverbal, struggle to convey their honest opinions.

OP, was. very similar at 2 and now is a teen. She was diagnosed at 3 with ASD and later on with severe learning. At 2 I was terrified of this diagnosis but I accepted it. Life is not always easy but DD is amazing and I would not change the world for her.

this stereotypical nonsense again. By the way, those with ASD who are nonverbal, struggle to convey their honest opinions.

It's not stereotypical nonsense, it's often true. Autistic people to tend to be very honest straightforward people. And not all those who are nonverbal struggle to convey their opinions, some do so very capably with the aid of technology like AAC devices and text to speech. Some is the key word, some non-verbal people. Some struggle in that regard, whilst some others write poetry - like that Indian young man whose name escapes me right now. Severely autistic, non-verbal and kicked out of a special school - he was homeschooled by his mother and he turned out to have quite the talent for the written word.

All I can suggest is until you get a diagnosis look at the individual problems

Delayed speech - request a referral to Speech and Language therapist

Chewing clothes/sensory issues - request a referral to occupational therapy

If you go in just from the autism diagnosis only they make you wait for everything but by getting the individual issues dealt with while waiting you start accessing essential services which often have long lists.

In addition to makaton on PECs look up free apps for autism and also Hanon more than words. These were courses we went on after our daughter was diagnosed. Good luck

It’s sad to see squabbling on what should be a supportive thread as what we all have in common is that us/our children have or are suspected of having a lifelong condition which many people do not understand.

I know for me that I learned behaviours. I had eye contact. I was the life and soul of the party. I was many things and when I got my diagnosis last year it was such a weird feeling because I felt like I could let my guard down and just be me.

My whole life makes sense now. I was wrongly diagnosed a few years ago with EUPD. I knew it was wrong just by bloody googling it. I ticked zero boxes. It’s one of the most misdiagnosed conditions in women who go on to receive a diagnosis of ADD/ADHD/ASD.

I am diagnosed with ADHD, OCD and anxiety. I am medicated. I also have fibromyalgia and am in lots of pain. The only thing I wish I could really change is the fibro. I completely accept who I am. It doesn’t define me at all but it’s part of me. The stigma has slowly been removed and I’ve found so many other girls and women who have “slipped through the net” so to speak and even when talking to others with the same diagnosis it is clear that it affects us in different ways.

My son who has Aspergers was difficult to diagnose as he also had eye contact and had loads of friends! These stereotypes and more are still being trotted out today by some so called professionals so it’s quite easy to see why Joe average would believe the same.

Apologies for huge post.