Autism relentless negativity and stigma

[Blessthismess2]

Hi there,
My baby is 17 months. Although she is so little, she has almost every red flag for ASD , and although trying hard to persuade myself otherwise , in my heart I know where this is heading in the not too distant future.

Everything I read online about kids and autism is so relentlessly negative and stigmatising. I’m also on a WhatsApp group for SEN and it’s similar.

I’m feeling so exhausted, drained and hopeless about it all. She’s so little I want to believe that she has so much development and potential ahead of her but just feeling weighed down by the weight of negativity about kids with SEND.

I’m not sure what I want from this thread , but perhaps some perspective and a dose of reality?

My son is 4 autistic and non verbal, at your childs age is when I'd started to suspect something but it took 2.5 years from that to get his diagnosis.

You really can't predict at this point whether if they do have autism that their current presentation will relate to a certain level of needs in the future, I really would advocate for not looking too far ahead and just focusing on the next hurdle whether thats getting relevant referalls or working on a particular inchstone.
There can be a bit of a variation between SEND parents, i might be one of those that seems a bit negative as we've geniunely been told he's unlikely to speak and could need support lifelong and accepting things in that sense is actually beneficial to my mental health, in a sense waking up hoping for speech every day was genuinely making me depressed but having a what will be will be attitude is keeping me going now.

You will definetly find other parents that are incredibly hopeful of the future and blindingly optimistic on the other hand, you also have to remember if confirmation bias really parents on support groups are more likely to reach out for support when things are going badly as there's not much of it about than rave about their children's achievements.

I wouldn't want to overload you, but if you wanted to share more specfically about your concerns then i'd be happy to signpost you to more specific places to look?

Thanks so much for your reply and sorry to hear about the struggles you have had with your son and the challenges you are facing 😔

could you share a little more about why diagnosis took so long?

In terms of my dc, I’ve had concerns about her development since I started to wean her at 6 months. That’s when it first hit me how behind she was compared to my other kids. She’s delayed in all areas, but particularly with social/ interpersonal communication- very limited. No pretend play, no copying/ gestures, no shared interest, no evidence of language/ understanding. She does babble a lot.

Honestly 2 years is not the worst, i've met people where it was 4+. Its purely waiting lists, he couldn't be referred until he was 2, then had 2 appointments and they needed reports from a couple of professionals to go to a diagnosis panel which was slightly dragged out. Its very rare to get diagnosed at the first appoinment and it's a postcode lottery as to what your wait could be.

For speech and language in general, the NHS is likely to say they are too young for a referall (and i m afraid nhs therapy can be quite rubbish), but who i would say could give advice now are;

1. Portage- its a council run service you can generally self refer to who come round to your home and do play therapy and some basic speech therapy idea.
2. Speech and language UK- is a charity that does advice calls for free with a speech therapist, you can pre book them on their website.
3. Google intensive interaction- its something you can learn yourself that works on communication and joint attention difficulties, it took months but our son started responding to his name and wanting to engage with us more from that.

Thank you so much for signing posting these resources- that’s really helpful. I’ll look into all of these 🥰

It isn’t all negative online. For a start, there is all the autism is a superpower rhetoric which personally I dislike and don’t agree with but some people like.

Has DD already been referred to paeds?

As well as the avenues of supported mentioned by @1995SENNDMUM you can look at a referral to OT and physio if DD’s development is delayed in all areas. In some areas, you can self refer to these. Some areas have drop in sessions for SALT/OT/physio where you don’t need a referral. Worth looking if you have anything like that.

Is DD in nursery? Have you looked for F2F groups locally for DC with additional needs?

I don’t know if you are anywhere near these, but if DD has difficulties with motor skills, Ingfield Manor School in West Sussex and Paces in Sheffield offer free sessions. Most of their clients with have cerebral palsy but they cater to other motor/physical difficulties. There are other places who offer sessions as well, some free, some charge, but I can’t remember them off the top of my head.

thanks so much for the reply.

there is all the autism is a superpower rhetoric which personally I dislike and don’t agree with but some people like

I haven’t really seen any of this? Is it more among adults with autism maybe? I feel like all the childhood- especially early childhood stuff is just so relentlessly negative and scary :(.

Shes been referred for a hearing test in the first instance but I’m sure her hearing is fine.

her motor skills aren’t so behind that they would warrant an physio referral I don’t think. She’s started walking although she’s still v wobbly on her feet. But she’s just generally behind in all areas and especially the interpersonal/ social/ communication is very much abnormal for this age. I’ve been thinking this afternoon that maybe I should look into some SALT even privately, or maybe even a course for me or something?

The autism is a superpower rhetoric isn’t just said about adults. It is said about children too.

A hearing test is normally done for young children before an ASD assessment because hearing difficulties can lead to some difficulties that can present similar to ASD signs.

It wouldn’t hurt to look privately for SALT if you can afford it. I would also request an NHS referral and complain if refused. You could also look at an EHCNA. DD isn’t too young, so don’t let anyone tell you that. EHCPs are very less common for under 2s but it is still possible to get them and they can fund SALT.

Thank you. That’s a great idea . I’ll ask about an EHCNA- hadn’t thought of that as assumed she would be too young. who do I ask for this? The health visitor? I’ll def asked about SALT on NHS but I’m guessing waits are long and support is limited. No idea how much private is but I guess it’s worth a try.

You can apply for the EHCP yourself as a parent, there should be an email on your council website.
Depends on your area but we paid £200 for a private SALT assessment, didn't book a therapy block after that but £100 an hour appeared to be the going rate.

You request an EHCNA from the LA. SOSSEN and IPSEA are charities who support parents of DC with SEN. They have lots of information on their websites and helplines. On their websites, they have model letters you can send to the LA to request an EHCNA. It would also help to read the SENCOP - you can find that on the government’s website.

SALT prices depends on what you want and who you use. Prices vary wildly.

Wow that’s crazy expensive 😨.

Thanks so much re the EHCP- I didn’t know all this, will take a look.

Have you claimed DLA? If not, do that.

You can find SALTs a bit cheaper than £100ph, but it is within the normal range. Disability is an expensive business. And demand is high.

Hadn’t even occurred to me about DLA. I’m guessing that’s not really an option though until I have a formal diagnosis ?

You don’t need a formal diagnosis. DLA is based on needs, not diagnosis.

I’m guessing this is spam? 😠

Yes, definitely apply for DLA. My son's SALT is much less by the way - £38 ph I think. So costs vary massively.

I've thought my son was autistic since he was only a few weeks old, spoke to a GP who thought I was crazy at 3, took until he was 4 for anyone to listen even a tiny bit, and until he was 5 for a formal diagnosis. Now he has an EHCP, SALT, OT and ELSA.

Yes, I would probably get a private SALT for your daughter if affordable (again, DLA will help with this) as the earlier support is put in place, the better. I wish he started SALT etc earlier, but everyone seemed to think I was mad when I suggested he may be autistic. Be prepared for some gaslighting; I've experienced a LOT.

Yes there is a bit of a stigma still but there is a massive shift especially with children and neurodiversity is becoming far more accepted (I'm a schoolteacher and have definitely seen this change over the past couple of decades).

There is a lot of negativity and also there is the 'superpower' rhetoric, yes. But ultimately your daughter is your daughter and isn't going to be exactly like any other child, autistic or not. My son is autistic and has ADHD. To a stranger he comes across as a bit odd and quirky. He's sparky and super bright (insanely good at maths). He's also anxious and emotional and find social stuff hard. This is very different to the poster earlier uptrend whose child is non-verbal. So you see no two autistic kids are the same and you'll just have to take it step by step with your daughter. I don't know how my son will develop as he gets older but there's no point in me looking at other autistic children to try to work that out. I'll just have to wait and see. Good luck xx

Hello, I am exactly where you are also.
I started worrying about my child at 9 months she is now 2 years and 4 months and those concerns have only increased. The big thing was my child doesn’t sleep, she’s not speaking, doesn’t gesture, answer her name, no pretend play, she has repetitive behaviour, she ‘stims’ by rocking and wobbles her head, huge meltdowns ect. I’ve been in an extremely dark place with it so I totally understand how you feel. Still on the waiting list for diagnosis and SALT so I am self funding SALT which has given me some ideas of where to start. Also nursery really helps. I’m also doing ABA therapy which is all extremely expensive but I’m trying everything I can. I’m also trying Folinic acid which hasn’t done anything thus far for my child but research it and see if it’s something you may want to look at it has helped some children. I also feel screen time has made things worse but sometimes you also need a bit of peace as I feel I’m loosing my marbles to. I’ve actually been so desperate I even went to a psychic for guidance lol. Hopefully things will get better for our kids. X

Oh and yes I also have applied for an EHCP and DLA which you should to… I want the DLA so I can fund the ABA therapy and SALT. You don’t need a diagnosis for either and I have evidence from reports to back up my claims. So you should also do this to be able to fund things and get more support

Thanks so much for your reply it really helps. Such a good reminder that all kids are different, neurodivergent or not. I just want to know that she’s going to be ok, but I know no one can tell me that. I’ve drafted the ECHNA letter but I don’t have any “evidence” to send along with it really, but hopefully it’s enough. I’ve identified a local SAlT (private) service so I guess the next thing is to contact them and see how much it is. Thank you!

Who referred DD for a hearing test? You can use evidence from them. Or did you self refer?

Has DD seen the HV? GP? Have you been referred to Portage? Is DD in nursery? You can use evidence from all those.

Since you are going down the EHCP route, if you use an independent SALT, it will be helpful to use someone who has experience of EHCPs and experience of writing Tribunal standard reports.

Thanks so much for replying. I’m so sorry you are going through this too. It’s so hard isn’t it? I didn’t know there was any ABA in the UK- I thought it was a US thing. Do you find it useful at all? Xx

thank you so much and honestly I am right there with you and also I’m so sorry as I know how awful this is and you can’t enjoy your precious baby 😢…everyday I feel a sense of despair and panic about my child’s future it’s absolutely heartbreaking… but what some of the other parents have said in this thread is very helpful and has helped me to!
In regards to the ABA therapy I feel it actually is more beneficial for my mental health (I feel I’m doing something for her), rather than doing much for my daughter…but she’s only doing one session a week and they say she needs much more… it’s literally them trying to get her to use a PECS board and a lot of it you can do yourself, I think if my DLA Is accepted il use that to fund another session as atm im spending one thousand a month on therapies which i dont really have . I have found the SALT much much more meaningful and beneficial in all honesty I found a SALT that specialises in autism and she has helped a fair bit already! I would defo say spend your money on that as opposed to ABA-find one that’s got good reviews for autistic kiddos… more than anything you need to have hope… when people label my kiddo as autistic when she’s not even diagnosed I get really upset and I don’t even like saying that to you either but just get the therapies in place and focus on that, get funding, see to your own wellbeing to. It’s really hard but hopefully we will see improvements x