Anyone else noticing the uptick in open hostility towards people with ASD?

[FFSakeDrinkSake]

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

https://www.researchgate.net/profile/Kunlin-Wei/publication/341091089_Abnormal_Gait_Patterns_in_Autism_Spectrum_Disorder_and_Their_Correlations_with_Social_Impairments/links/5ec90a13a6fdcc90d68fc4dc/Abnormal-Gait-Patterns-in-Autism-Spectrum-Disorder-and-Their-Correlations-with-Social-Impairments.pdf

there is tons of evidence that people with autism move differently, it’s partly to do with proprioception issues.

https://www.sfari.org/funded-project/neuromuscular-mechanisms-of-motor-impairments-associated-with-autism/#:~:text=Hypotonia%20in%20early%20ages%20is,speech%20production%20and%20social%20challenges.

there is also lots of evidence of hypotonia being common in autistic people. It’s not just in babies. Low muscle tone can be a life long issue.

Thank you, yes this is what I'm saying. I know it's only part of the criteria but it does meet that criteria easily.

@ArseInTheCoOpWindow and @Laughingoverspiltmilk I'm aware there are other ways to get hrm for autism such as virtually unable to walk for example. Smi has a series of criteria which a child has to meet and if they do they awarded hrm. It isn't the only way. However if going down this route autism as a dx meets part of the criteria automatically. The rest of the criteria still has to be met.

@Perzival - to be clear my annoyance isn't at you!

Hi, I did write that "The rest of the criteria needs to be met and proven too." In my post as I'm aware an autism dx on its own doesn't qualify for smi but it does make proving part of the needed criteria much easier.

@WaitingForMojo I'm having a bit of an evening and thought your posts were from two separate people. Sorry for the duplicate response.

@WaitingForMojo just out of curiosity and my apologies for spamming but in your experience is it normal for a child to have hrm under smi from three to 16 without much argument? Or is the fact that you're involved proof of the difficulty that the family has already had?

Ds has had it since being three, we've never had to appeal. It's just renewed with evidence (we get lots of paperwork). I'm just wondering if this is the norm please even for kids with complex needs? (This thread has me questioning a few things).

I do get involved at application stage as well as appeal. I do see families awarded SMI, and it’s becoming more common since as you rightly say, case law has established precedent that autism qualifies. In cases of profound disability, it’s more common as you tend to have a lot of professional evidence.

You sound very knowledgeable and articulate, and capable of advocating for your child. I imagine you filled in a very comprehensive form and attached relevant supporting evidence. Unfortunately, families in which parents themselves struggle to do that, or struggle to accept their dc’s disabilities, or become overwhelmed by how upsetting it is to have to frame everything so negatively and spell out your dc’s struggles on paper, tend to need support to secure the correct award.

It is common for autistic children to be awarded MRC and LRM without much argument, if the forms are completed properly (either the family is articulate and savvy or they have support). The higher rates are harder to get.

My dc get LRM and I think that is the correct award. I don’t feel that the SMI criteria applies to them. One gets HRC, the others MRC. The one without an autism diagnosis gets the higher award, and actually does have a higher level of need, so the award is correct. So much depends on how the forms are completed, which is unfair.

When they transition to PIP at 16, it becomes more of a battle. I wouldn’t expect you to have difficulty obtaining PIP for your ds, given what you say about his needs and that you have plenty of evidence.

I hope that answers your question. Happy to discuss further if not!

'Suffers from neglect.' What an uninformed statement. Firstly, there is copious research that demonstrates various incidents of trauma both pre and post birth, especially in the first 36-48 months, has a major impact on brain development which leads to significant learning gaps, developmental delay, sensory deficits, and, for example, raised cortisol levels which leads to an overactive amygdala and subsequent fight, flight etc responses.
And before we generalise in judging parents, these difficulties can result from medical conditions and disabilities which in themselves are traumatic, and/or the subsequent treatment they have to endure.
Secondly, these 'behavioural' difficulties are massively exacerbated by those who should be supporting these children arbitrarily labelling them as naughty and badly behaved, and inflicting punishments that create secondary symptoms. It's like punishing someone who is physically disabled because they 'refuse' to run the 100 metres.
And when we talk about adopted children, there is still massive ignorance and lack of understanding around Foetal Alcohol Spectrum Disorder (FASD) even though extensive research has indicated that the prevalence of this disorder is actually higher than ASC. FASD significantly impacts brain development as well as a whole range of related physical conditions, depending on the stage of pregnancy during which the consumption of alcohol took place. There is no safe level of drinking during pregnancy. Many children who are diagnosed with FASD have secondary diagnoses of ASC or ADHD.
One thing a diagnosis SHOULD help with, at least to a degree, is that children are seen through the lens of their condition and not subjected to outdated behaviour management techniques which caused further damage.
Unfortunately, many comments here demonstrate the continuing ignorance and refusal to take in the latest research and advice, especially amongst purported professionals.

What do people use for evidence once children get older, above ehcp age? My son, like most autistic children, was diagnosed and discharged so we don’t see any health professionals. At the minute he has an ehcp and in specialist autism school, I didn’t apply for dla till after we had the ehcp and got it fairly easily, lrm and mrc. We don’t get any social care support as our area you have to be on hmrc or hrm to get automatically and we didn’t get after assessment as he’s an only child whereas children I know of similar needs but parents have more children do qualify. I’ve no issue with this as I don’t think we are the most in need of social care support but now becuase there are so many ehcps adult services only assess children transitioning to adult already with social care support from children’s services rather than all children with ehcp so he won’t automatically be assessed by adult services on transition to adulthood. At the minute he is mid teens and unable to go anywhere on his own, there is absolutely no way he would hold down a full time job although I am hopeful he could do some sort of work with support in the future. But what I am worried about is that we won’t have supporting evidence for pip after the ehcp finishes and if it’s anything like dla lots of accommodations are then based on being in receipt of pip. I know ehcps run to 25 but at the minute I can’t identify anywhere for him to go so I think la will try and cease the ehcp at 18

My sons were on DLA and had a mountain of evidence for that, statements (which later became ehcps) specialists letters, gp letters, school risk assessments and letters, continence service involvement evidence, etc, just loads of stuff.

When it came time for them to transition to pip all the extra info it took was the assessor meeting them! We already had gp letters, previous information and assessments etc. There comes a point when you have to say to them look, you've got all the independent evidence already. They're still autistic. All I can tell you is how it currently affects them.

We had to give the assessment centre strict instructions how to deal with our youngest and stressed they must not let him get between them and the door and to give us their assurance that they would not hold us responsible for any injury that they sustained as a result of not following our instructions on how to deal with him. He was awarded enhanced rate care and mobility for an ongoing period which basically means every ten years or so they'll get in touch and ask us if he'll still attack them if they try to talk to him.

Trouble with mine is that he can seem quite articulate and if for example they asked him if he could cook a meal and manage money he’d say he could but the reality is he can’t without significant support. When stressed he can also become violent but is less likely to be with strangers for example in an assessment. At the minute I have supporting evidence from school so it’s not just my word but when he’s out of school I won’t have this anymore

Nah, people have always hated us.

He will transition to PIP at 16, so his EHCP will still be good evidence. You can also use historical evidence so your evidence from his education will be considered. The fact that he needed a specialist school etc will still be taken into account, and his EHCP is valid until he is 25.

He will likely need support beyond 16, whatever form that takes. So you will likely have evidence from college / supported work etc. many people use Access to Work when in employment and there will be evidence from them too.

I’d advise that you become his appointee to deal with his benefits, otherwise he will need to speak to the DWP himself etc and they won’t speak to you on the phone without permission or allow you to answer at assessment. If you are appointee, the claimant (your DS) doesn’t have to attend the assessment. The assessor may try to insist but the guidelines for assessors say otherwise. Many of the assessments are by phone since Covid.

As evidence, for my child who is 16+, I used his SEN statement, his diagnostic reports (although old), evidence of support needed for exams, and evidence of needing third party access to bank account because he couldn’t manage it. Also he works part time and his employer provided evidence of support needs. I also attached email communication with various agencies from when he has encountered difficulties (not being specific here to protect his privacy).

My dc would also say he’s amazing at everything! Your evidence from school can still be used even as historical evidence. His EHCP will continue to 25.

https://www.facebook.com/100063796172136/posts/pfbid0bLWjTGKxZy6uZknYYC3VZ7YvoaYyAuBtaZ95pYnBR6N2vguK8MAVz6Nh7AGeu2YEl/?app=fbl

link to suggested evidence

Ooh this is timely. I've got my head on the sand about my daughter turning 16 within the next year. She gets mrc and lrm. She has iep (not ehcp) and is under cahms too.

However she is very articulate and if asked will tell anyone everything is fine. (part of the issue tbh 🙄)

What is an appointee? Can I do that?

I am quite concerned about the move to pip is there a basic guide anywhere. I don't want her to lose the money as I have had limited work in part to be available for her. But I'm also worried ont he surface she's the type that people (wrongly) come out with "but they don't look autistic" 😠.

Any DLA to pip advice would be truly welcomed.

I’ll respond properly to this later with some advice, but you absolutely can become your DD’s appointee. That means that you deal with her benefits. If you’re not made her appointee, she will be expected to deal with the whole claim herself.

Around her 16th birthday (or a few months before) they should write to you asking whether you will want to claim pip. It is always worth claiming as the dla payments will continue until a decision is made. There is a box to tick to ask whether the claimant requires an appointee. If you tick yes, they will send you a short form to ask why.

You need to give a disability related reason, rather than ‘because they’re only 16’. If your dc can’t manage money / can’t speak on the phone / can’t engage with the DWP, that is what you need to explain. They often just approve it, but sometimes send someone out to speak to you.

Once you are appointee, correspondence will be addressed to you and the DWP will speak to you as your dc’s representative. The payment can be made to either you or your dc’s bank account. My dc’s is paid to me, and I discuss with him what we spend it on. How people approach that obviously depends on the dc’s level of understanding.

The thing to understand is that pip eligibility criteria is very different from DLA. I’ll come back to elaborate on that later on today.

@GeneralMusings

My dd is the same

I was very trustful on the form but I made it clear that dd can't be trusted to do what 18 yos can do.

She need constant reminding to eat and take her meds

She doesn't wash or change her clothes unless I remind her.

She will panic if a bus is 1 min late and assume it's not coming. She cant problem solve or think of different scenarios in that sense

I made sure all that was on the form and they dis ring me and we had a long chat. She was awarded mid rate. No mobility But I'm ok with that.

She is very intelligent and prob will
In time be able to work part time or for herself but it will be at least 3/4 years before she may be mature enough. Her executive function skill are dire. I hope they improve now she is getting the right support and meds.

For now the pip gives her independence and helps pay for her therapy sessions. She needs those so that in time she may be able to work therefore not costing the tax payer more money. It's an investment

I wish the General public would see it that way

Support our ND kids young and it will cost
Less in the long run.

Truthful I meant

Thank you @WaitingForMojo

This is really interesting to me because my son (4.5) is awaiting assessment for autism, he was referred via our GP to a Paediatrician who then referred on to children's autism assessment, which was accepted this year.

His nursery have said they'd be very surprised if he isn't diagnosed, but the senco also mentioned attachment disorder as SOME of his struggles are around intense separation anxiety etc.

But none of the circumstances seem to fit. Both parents together, no violence or long term separation from either of us. There was lockdown which obviously had an impact on socialisation but no more than all of the other children his age. And I was on maternity leave so there was no WFH while he was watching a screen or anything. The only things we can think of are "normal" things that maybe affected him more than we could have anticipated because he's so sensitive - such as (failed) sleep training for a week or so and dropping at nursery (handing over to a stranger in a mask 😬) I feel awful thinking these things could have had such an impact but then again it's no more than most parents had to do.

@Fivebyfive2 in the post you quote they are wrong when they state that attachment disorder is caused by severe neglect such as Romanian orphan situations! For example a mother with severe postnatal depression who literally can only function enough to feed and change a baby's nappy ( ie no cuddles, bonding or other interaction with the baby) can be a cause of attachment disorder. Obviously this is not their fault but it most definitely does cause it.

One other issue that can lead to attachment disorder is long stays (months) in hospital with constantly changing caregivers.
But it is not the case for you clearly. @Fivebyfive2
Children do have different attachment types and often not very informed professionals think that only one type is normal, but this isn't true.