Finding it very hard to accept

[tempnamechange98765]

I'm ashamed to be writing this post but I'm really struggling and hoping that some others might understand.

My DS will be 4 at the end of the year and I suspect he has ASD. It wasn't obvious at all until recent months - in fact I myself had almost no indicators from when he was younger, or only really minor things. Recently however I'm noticing more and more - finger posturing, looking at things from funny angles, refusal to engage in role play ie pretending to be someone else.

I'm finding it so hard to accept that this is it - this is my child, he has a lifelong disability and the future is really bleak/uncertain. I hate it when I catch him doing his little things eg looking at things a funny way or the finger posturing. I ask him to stop as it makes me feel so unhappy and on edge. He only really wants to play with vehicles, making engine noises all day. I hate it, it irritates me so much and I hate that he won't show any interest in anything else that I imagine a "normal" child would - colouring/drawing, dressing up, role play etc. I'm already struggling to understand/relate to him now, as a little child, let alone as he gets older.

I also have a baby DS who I'm convinced will end up with ASD also, given the high chance of siblings having it. I feel it's so unfair - why us? Why my kids? There is no ASD in either of our families that we know of. I find myself envious of friends having babies now, as the likelihood is that their children will grow up "normal", and I'll be stuck with mine.

That sounds so awful and I'm in tears writing it, but I can't help how I feel.

Will it always be like this? Or will I eventually learn to accept my DS for who he is? Or, will it only get worse as he gets older and the gap between him and peers widens?!

Hi. Do you suspect or have you actually gone through the assessment and been told he does?

My son was just over 2 getting his 2 year review when the HV said she felt he needed assessed. So the assessment began back in February. We were told just this past week that he likely has aspergers (they don't call it that now, they call it 'ASC' autistic spectrum condition).

He will be attending speech therapy in October as he still doesn't talk and there's a child psychologist going to his playgroup to assess whether he will need assistance at school nursery when he starts in Janaury. He will be 3 next month.

I don't want him to have anything wrong but I've realised there's little that can be done to change it. All I can do now is help him, as I have done all along. Of course I cried in the doctors room when she said he most likely had it and told myself and my husband to think about whether we want a formal diagnosis done.

Aspergers is a high functioning and mild type of autism but even at 2 years old for my little one, it was picked up. Has anyone said to you they think your son might be autistic?

There's a checklist online to see if your child shows the signs but going to see a doctor is the best start.

It will likely be years before you get a diagnosis. I know my son probably won't get a formal one (if we choose that) until he is 5.

The hardest part for me is people being involved. Of course it's totally our choice for him to be assessed and diagnosed and we can stop it at any time as they do class him as mild but all I want to say is don't consider your child to have something until you have a professional infront you saying they have it or likely have it.

Children are all very different and even the really quirky one's often don't have autism of any kind. If you have a strong feeling, you are likely right (mothers intuition) but you don't need to digest it until you are physically told. By then you will be more used to it

Hi OP, I'm sorry things feel so bleak. Yes, my experience of receiving recent dx for my five year old son was that I felt overwhelmed, frightened for his future, raging at the unfairness. Autism is not a small thing.

However I would say I'm so grateful that in our day and age we have so much more understanding and information about autism. Especially from autistic adults who can articulate so movingly their experiences as children.

By finger posturing do you mean wiggling his fingers at something, or in front of his eyes? If wiggling at something it may be an expression of joy and delight at something he's very interested with. If in front of his eyes it may be a form of stimming which is soothing.

Have you previously felt connected to your son and enjoying him? Is it the growing fear of autism that is causing you to feel irritated and struggling with him, or have you always felt this way towRds him?

I'm trying to respond to the things you've shared about your feelings and to express that yes, I do understand that bleak place. But I also think it's very important to look at the fact that currently it's something you suspect rather than has been dx. It's very important to get a full assessment.

Thank you both for taking the time to reply. AMAM8916 he has been referred to neuro development, but the waiting list is about a year. He hasn't misused any milestones but I pushed for him to be referred when his pre school flagged some issues. The issues seemed reasonably minor, but all put together I think it means something. The health visitor agreed it was worth referring.

I imagine my DS would be classed as high functioning like yours as he doesn't have any other delays that we can see. He doesn't have any language delay.

Mapland by finger posturing I mean putting his fingers into strange positions, mainly by his sides when he's walking but also sometimes when he's sat. A bit like the ok sign, or sometimes crossing his fingers over each other. On occasion he does seem to hold his hands near his eyes too, and he definitely looks at things from odd angles.

Yes I used to have a lovely relationship with him, up until I got pregnant when he was 2.5. We still had a quite good relationship, but he got more challenging as he got older and I was very sick when I was in my first trimester. He went through a difficult phase around 3 and I found myself losing my patience with him more and more. And these days when I'm on the lookout for these odd little "things", I snap at him more and more.

I wish I didn't, he's a lovely boy and I go to bed every night promising that tomorrow will be a better day. But then he starts doing these things that put me on edge, or just irritating me (and I'm sure 3 year olds can be irritating anyway!!) and I get so cross with him. I hate myself for doing it, but equally then I get so depressed about the future.

Joining parents groups will.help you a lot. Good luck

There is a Facebook group (and YouTube channel) called Nurturing Neurodiversity which you might find useful. It’s been created as a support group for those with young children who have, or may have, ASC.

Try not to prevent your son playing in a way he likes and doing things which are not dangerous or destructive but that you think are not typical. Take a step back and imagine how you would feel if you had a partner doing the same to you. He is your son and needs to be nurtured and respected for who he is.

If you get down on the floor and play with your son, following his lead, you will find a way to connect with him and encourage him to interact with you more if you persist.

It can be hard to come to terms with the fact that your life might be different to the one you had envisioned but remember that, ASC or not, he is still young and with your support and guidance he will be able to achieve much.

As you learn more about autism you may come to realise that is has not come completely out of the blue. You may recognise traits in yourself, dp or family members though they may still be largely neurotypical.

Could you be mildly depressed after the birth of your littlest? It is a very stressful time with two little ones, as a lot of Mumsnet will attest. Yes your ds may have ASD (mine did) but your feelings about the future (hopelessness) and your reaction to him (irritation) may be more than just a reaction to a life changing prognosis. Ds2 did much of what you describe at that age (he was only diagnosed much later, at 7) and I remember adoring him, in fact when other people talked about him being difficult/spoilt/demanding, I couldn't see these things in him, just a quirky delightful empathetic child. He had two siblings that were also demanding. I became depressed trying to cope with them all, but I don' think his situation was a source of my depression, just tiredness, and feelings that I wasn't a particularily switched on mum (later I found I was hypothyroid and vitamin d deficient) He used to line up toys a lot and make numerous engine noises. Later when he was older dressing up and craft became more interesting to him, but at that, he didn't really have the fine motor skills. He loved running around and playing with his toys; he got on well with his twin sister too.

Now I would say his future is very bright, he is 17, has friends and doing A levels and a very creative personality. I still feel that bond that I had with him when he was little and my adored son.

Just hold the thought, how much you mean to him and how he means to you, and that will go a long way towards him having a happy fulfilled life. There aren;t any shortcuts but you will be incredibly proud of him, whatever his diagnosis. And don;t forget to go to the GP and look after yourself too, just in case there is some other reason affecting your morale, post baby two.

There is a book called The Out of Synch Child Has Fun which has lots of activities if you suspect your child might have sensory needs motor skills issues. Things like pushing a toy wheelbarrow, or playing with playdough, singing songs with actions, crawling through a tunnel made of chairs and table cloths, trampolines. At that age some children aren't interested in colouring or small figures/imaginative play. I used to play a bathtime game with my children where I pretended I was in the forest and sitting down on a rock, only to find i had sat on them(wrapped up in a towel) Cue great surprise. They thought this was hilarious. It was imaginative play of a sort, but they couldn't have thought it up themselves...Likewise most chasing games or hideand seek, it is imaginative play but it needs a leader to orchestrate it.

Thanks Nettleskeins. What a lovely post. You sound like the sort of mum I wish I was (and feel like I should be) but I struggle. Mainly when I'm on my own (I'm on maternity leave). I'm much better when DH is around on the weekend, as the pressure is off.

I need to go back to the GP. I was given anti depressants but haven't wanted to take them. I'd rather do talking therapy but they didn't suggest that last time, they were quick to just turf me out with a prescription I didn't really want.

Can I ask what prompted you to get your DS assessed, if you didn't see any issues when he was younger?

My DS isn't what I would describe as difficult; the opposite actually, he's surprisingly reasonable for a 3 year old a lot of the time. Which makes me hate myself even more as he's actually a sweet boy and a lot of the time I think he's very eager to please, often tells me I'm pretty or says thoughtful things like "thank you for making my lunch". I wish I could reflect like this during the day, rather than only when he's in bed!

@AMAM8916 you said "Aspergers is a high functioning and mild type of autism"

Please stop spreading this rumour, it's totally misleading and it's insulting to anyone who is diagnosed with autism, it's not some trivial thing to be dismissed as an irrelevance.

High Functioning means having an IQ of over 70. That's all.
It most certainly does not mean "can pass for NT most of the time"

There is no such thing as mild autism, for someone to be diagnosed as having autism, they must have enough traits for a diagnosis to be given.
DSM-5 states "The manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”."
www.autism.org.uk/about/diagnosis/criteria-changes.aspx

See this site theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/
"My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her."

Who was passing it off as nothing? So I sat and cried in there for nothing?

First I've heard that high functioning means an IQ of 70 or more. High functioning means less severe than low functioning. As in someone with aspergers alone sits in the high functioning category of the spectrum which means they can function in life on a high level.

Your theory that the functioning part refers to IQ is such BS and it's you that's spreading rumours.

There's people out there with low functioning autism but IQ's of 70 or more.

Being diagnosed on the spectrum as high or low functioning has absolutely nothing to do with someones IQ. It's to do with their communication and social skills and how well they function and to where they are placed.

Aspergers, or now what they call ASC, is a condition that sits in the high functioning part and issues are less severe than low functioning which means it can be classed as mild (for my son anyway).

Never once did I say that aspergers means he is NT 🤔. So if you want to put my words in my mouth, go ahead but it's clear I never said that.

I can't remember my son getting an IQ test to be classed as high functioning so do enlighten me as to how and when they figure out the IQ of a 3 year old to decide if they are high or low functioning!

I sat in front of a long standing paediatric doctor who said where they are on the spectrum is usually placed by how much intervention and help they need as well as how good their communication and social skills are. She then said aspergers will be diagnosed when the child is high functioning and needs low intervention and help but sometimes children are diagnosed with aspergers, SPD and a learning difficulty for example which would place them further along on the spectrum.

My son is only being assessed for aspergers and yes, they are saying this stand alone condition is mild and he will be mainstream

Blank Ds was diagnosed with Autism last week by a community paediatrician. I absolutely agree with you about 'high functioning' not being the right word. The paed did use this as an explanation. I told her that Ds was not functioning well at all at the moment. She ignored me and told me to give him a book on asd and talk to him about Bill Gates.

So we left the 20min appointment (which Ds was not invited to) with a few sheets of paper on local groups and were told that there is no futher appointments or any support available. Nothing about the situation Ds is in feels 'mild' at the moment.

AMAM8916, Blank is correct that high functioning refers to no learning disability - i.e. an IQ of above 70. All Asperger Syndrome means is an IQ above 70 and no language delay at 3 years old.

It is offensive to those with HFA or AS to suggest their difficulties are less severe. They are not. Just some needs are different. I think getting rid of the high/low functioning distinction is one of the good things about moving to everyone getting an ASD diagnosis now.

@AMAM8916

Where are you getting your information from? Asperger's is no longer diagnosed in the UK.

See my previous link theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/ to understand what the autistic spectrum is, it's NOT a straight line. Your paed appears to have a seriously out of date understanding of the spectrum.

From wikipedia - en.wikipedia.org/wiki/High-functioning_autism
"High-functioning autism (HFA) is a term applied to people with autism who do not have an intellectual disability (an IQ of 70 or less).[9][10] Individuals with HFA may exhibit deficits in areas of communication, emotion recognition and expression and social interaction.[11]
HFA is not a recognized diagnosis in the DSM-5 or the ICD-10.
Is your child being diagnosed under some other system?

My son is only being assessed for aspergers
Which assessments only assess for asperger's?

I'm sorry, but you do seem to have a real misunderstanding of the diagnostic process.

@Punxtawney Handhold, I know, the "mild autism/HFA crap is really infuriating to listen to, it's an absolute insult when you see a kid in mainstream whose needs aren't being met.
I'm really sorry you've (that's you and your son) been treated so badly by the system. Do look around and see if you can find some support for him, I know you don't want to change schools, but now you've got his diagnosis, please do think about an EHCP for him, it lasts until age 25 and will help with him accessing extra help not just now in school but for FE as well.
For now, take your time and see how he processes the diagnosis, can you find anyone in the autistic community on youtube that he can relate to so he can get around the idea that he's "wrong" and embrace the fact that differences are to be appreciated and needed.different does not mean wrong. Have you looked at firms that actively seek autistic people to employ?

Thanks Blank school are actually being far more supportive. Obviously the support is still quite limited though but they are trying much harder. We are back in for another meeting once they have received confirmation of the diagnosis. Ds is in denial. He does not really want to talk or engage with us. He blames us for his diagnosis. The school talked to him last week to explain the diagnosis (as the paediatrician was not willing to do that) but he is just not ready to accept any information. We do actually live close to a very large multinational company that actively employ those with autism. Not sure what kind of opportunities they offer though.

Sorry tempname did not mean to start moaning about my issues on your thread. Just having one of those weekends! I hope that you manage to get through how you are feeling at the moment. Remember your Ds is still very little and there will be plenty of time for intervention and support should he need it.

I definitely recognise some of the feelings you describe - particularly the anxiety about the future. I think DH definitely went through some dark times during the 13 months it took to get our son diagnosed.

I would say, DS is 5.5 now and the vast majority of those feelings have gone away. I still worry a lot about his future and have days where some of the behaviours stress me out, but generally we just get on with things now. This is our normal and we're ok with that. There are mountains we have to climb, but there are also plenty of awesome moments too.

Best advice I can give is:

1. don't try and fight against the autism and spend ages trying to get your child to present as 'normal' (whatever that is). Autism is who they are - it won't go away and having to mask and suppress their true self is incredibly draining and stressful. I think parents generally get much better results if they spend time really trying to understand the needs underpinning their child's behaviours and support those needs. All you can really do is work with the autism...

2. Fight for whatever support your kid needs. It is a fight to get resources sometimes and it totally sucks - but the right package in place for your child can pay dividends. We claim DLA to pay for private SALT and OT appointments, we have an EHCP to help our son in school. It was stressful but worth it. He's in mainstream and coping brilliantly. He'll never be top of the class but i'm confident he'll come out of primary able to read and write.

The future may not be as bleak as you imagine it will. My son is moderately functioning child with classic autism and a ton of the speech and language issues. However, every time I place limits on what I think my child can achieve - he proves me wrong. xx

Excellent post WingingIt

I think parents generally get much better results if they spend time really trying to understand the needs underpinning their child's behaviours and support those needs. All you can really do is work with the autism

I can recommend the book Uniquely Human to give a lot of insight into this.

ooooh will look that book up - thanks!

Ladies, please take your arguing elsewhere. The OP is worried and upset and come here for support.

Great post by WingingIt

I would also second the suggestion of getting in touch with the Group linked to above, or with NAS who have all sorts of things going on for parents - and you don't need to wait for a diagnosis. they have local groups, training sessions for families, or sessions that help you understand autism, and sessions that will help you learn how to support your dc. They have on line groups and Q&A forums and all sorts.
Understanding more, is the key.

Learn to enter his world and stop expecting him to enter yours. Learn to love his quirks. He needs you more than you can imagine.

Just want to flag to OP that most areas have some self referral system for nhs talking therapies. Scroll down for link to find yours
www.nhs.uk/conditions/stress-anxiety-depression/free-therapy-or-counselling/

Learn to enter his world and stop expecting him to enter yours. Learn to love his quirks. He needs you more than you can imagine.

Absolutely this. A million times this. Trying to force my son to conform to my world has nearly always been a recipe for disaster. Taking time to engage with him and his interests, however strange, has really opened up a fascinating window on his world. I can't get my son to do jigsaws, play with lego or paint. But we have spent hours discussing the London Underground! You can fight the autism but the autism will always win and you'll torment yourself. You need to find a way of accepting your child for who they are.

For the record, when my son was first diagnosed his was non-verbal, not toilet trained, had huge behavioural issues, couldn't do pretend play etc etc. 3 years later and he's a totally different child. ASD kids tend to hit milestones late but they are still capable of making huge progress. The future doesn't have to be bleak - just different from what you envisioned.