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.

@Fivebyfive2 two of my autistic dc have pronounced separation anxiety, one severely. It was asked about during assessment and seen as supporting the autism diagnosis (struggling with a change of caregiver, needing me to coregulate and make sense of the world, etc)

That was me. The situation you describe is neglect. It's not the mother's fault but it's neglect. As I said, the situation I am very aware of is a situation where there was domestic violence in the home (which resulted in a similar shutdown to the PND situation you described).

Similarly for hospital admissions, being passed around from pillar to post without a consistent caregiver is neglect in my view (the parent didn't sort a consistent caregiver) but obviously it's not the mother's fault. There can be circumstances beyond your control that mean you're not able to properly care for your child. Very little child neglect is actually caused by people who don't care about their children. Normally they're doing the best they know how. Obviously there are the extreme, horrific cases of abuse not not all neglect is in any way intentional.

@Fivebyfive2 don't worry about what the SENCo said. Attachment disorder does need to be considered but there's nothing you've said that suggests you have done anything different to your average parent. I can't tell you whether your child's issues are related to attachment disorder or not, but what I would say is that if you do get that diagnosis try you best to reflect because the important thing is your child gets the right support now. That doesn't mean you have to blindly accept if you completely disagree (and on the facts you've provided I think I would challenge). The best approach is to be open when you discuss with professionals that it was suggested to you and go from there.

Different scenario but when I was being assessed for autism one of my biggest worries was that a friend had suggested that maybe some of my issues were because I had narcissistic tendencies (particularly in the context of me interrupting people - was it that I didn't pick up on the social cues or when to speak or was it that I didn't actually care that I was interrupting). I raised it during assessment and actually was told that there were no signs, and that me obsessively worrying about it was probably a good starting indication I wasn't a narcissist!

Also, all of this is my opinion from my own experiences. I'm not an expert, I'm someone with autism and autistic kids. I get things wrong. Please don't take anything I say as fact if it's stressing you out - talk to professionals. The whole assessment process is a really hard thing to go through.

Nice friend!

@Purplebiscuitwithsprinkles things could be managed better all around. In my area, referrals have to be made by a senco, not a GP, so we have no choice but to ask them. I'm diagnosed with ADHD and ASD, my DS was diagnosed ASD two years ago after several years of asking, now my DD is on the waiting list. My psychiatrist tells me it's often genetic - my parents didn't recognise my struggles in childhood, but I can't let me kids unnecessarily struggle (far from having to be pushy, our senco has been brilliant and things have progressed easily)

What is SMI?

Well all I can say is that my son was

1 unable to swallow for 2 years
2 Had hypotonia and still struggled to breaststroke due to stomach muscle issues
3 Had and sometimes still gets severe constipation - we still have to use movicol from time to time
4 Has motor coordination disorder

and is ASD.

For me there is a definite link to some neurological damage hence the VEP test results.

As a small child he had a lower immune system and was ill. I mean how many toddlers get cellulitis? Also the years and years of glue ear etc

Anecdotally one parent also thought there might be a visual appearance aspect - my son was a prettier boy when younger as was this man’s kids.

I wish that more money was spent understanding it all but I guess that there is no money in it.

Severe mental impairment

Thank you.

God, I really wish I could stop interrupting people in meetings. It's worse if a virtual meeting 😔

My DS is 17 and when he got to 16 and he had to apply for PIP (I think it is ridiculous that 16 yo kids are expected to apply for something most adults find difficult!) the first thing we had to do was have a home visit for them to agree for me to manage his PIP on his behalf. It was easy enough though and only a short meeting and all agreed. My DS has never had an EHCP mainly as he was home educated for a long time. I used his autism report as evidence and he gets the enhanced rate for care and mobility.

Oh and he didn't have to be seen either, I had a phone call and that was it.

My DD has severe separation anxiety. Have you found anything that helps?

It’s incredibly difficult. How old is your dd?

I haven’t got any magic solutions. Low demand approaches work best for my dd and letting her do things in her own time. But that isn’t always possible! She’s been out of school for a year, reduced timetable before that. Since she left school and is less overwhelmed generally, we have had some success with a very gradual approach. She can now be left with one grandparent for short periods of time during the day. We literally started with me popping to the car with my mum in the house with dd. And dd didn’t like it. It’s taken a year to build it up gradually. We’ve had no choice but to leave her with fm on occasion as my other dc has medical appointments that she can’t come to. We’ve moved from her sobbing and retching and trying to run after the car, to being relatively ok even though she does text me repeatedly about when I’m coming back.

Last year was incredibly difficult. Dd was completely shut down and unable to leave the house, and wouldn’t cope with me leaving either even to walk the dog for ten mins. I was a bit of a prisoner for a while and it was hard for everyone. Leaving school was critical for us as dd couldn’t cope with anything else whilst trying to attend. But appreciate that isn’t for everyone. She’s home Ed now and she’s started to attend some social things (with me) and to talk about maybe going to a friend’s house. It’s taken a year at her pace though :-(

@GeneralMusings I haven’t forgotten to come back to this thread (sorry, op, for derailing a bit).

Your dc (and mine too) does sound like the kind of young person who can find it hard to secure a pip award at transition from DLA. That doesn’t mean they’re not eligible.

The important thing to remember is that eligibility for pip is different from dla. For DLA, you need to show that the child requires hours of care that are over and above what a child of a similar age might reasonably be expected to need. This is for the care component.

For pip, the amount of care needed is irrelevant. It’s about how they manage certain specific tasks of daily living. Prompting, use of an aid (timers, dosette boxes for meds, alarms on phone) etc all add to the points scored. You need to spell out why they need this support with the tasks and how it relates to their disability.

For the second part, mobility, it is actually easier to score here than it is for dla (because children are expected to need accompanying etc to a certain degree, and again because the criteria are different).

A young person like your dc and mine will score all their points under ‘planning and following a journey’ as the second part is for physical mobility needs. It’s about whether they can undertake a journey independently.

For all these things, they need to be able to manage it reliably, repeatedly, and safely. And on the majority of days. So if your dc can manage to prepare food a couple of days a week but couldn’t do it every day, say so and why. Etc. Think about how your dc would manage if you were abducted by aliens tomorrow and had no support, that will help you to clarify in your mind what support they are actually needing to manage the activities.

I’d recommend getting help to complete the form. CAB can help, and are sometimes great, sometimes not! There are companies who will help and know the case law inside out, they do charge on a not for profit basis (like the one I work for) but will often also give free advice in the initial stages.

I’d recommend finding the pip descriptors (they’re online) and deciding what your dc’s needs are and what points you feel they qualify for. And framing your answers around that. And evidence as much as you possibly can why those needs are a result of their disability. Include as much professional evidence as you can to support your claims.

I hope some of that helps. I haven’t gone into case law as i don’t want to overwhelm you. If you run into real difficulty pm me and I’ll try to advise as best I can.

Because people are jumping on the bandwagon to get special treatment and rabbit on about it.

@GeneralMusings

www.autism.org.uk/advice-and-guidance/topics/benefits-and-money/benefits/types-of-benefit/personal-independence-payment

ODFOD

Thanks so much @WaitingForMojo . We've got less evidence now as when she was diagnosed all that was "recent" and she has less professional inv now. Only cahms.

I think I'd be happy to pay for some help are you allowed to say the company you work for?

She's 12.

Yep, low demand and doing things in her own time really works for us too but can be difficult with school. I'm wondering if we need to try a reduced timetable.

That does sound so difficult for you and incredibly distressing for your daughter. Luckily I have a 17 yo who she is happy to stay with for a couple of hours as long as he stays right with her.

I think this is stemming from me having to go into hospital for a long stay when she was 5.

My eldest was home educated til 14 when he went to college. I don't feel I'm in a place to do that now and I just don't think I have the energy!

Yep, because it's so easy to 'jump on the bandwagon' of having an ASD diagnosis 🙄 ODFOD

@GeneralMusings on the CAB website there is lots of information to say exactly how to answer the questions. I used this to do my DS's. I also think what is he like on his worst days and write that.

The ‘worst days’ advice is fine for dla but you need to tread carefully with pip. The legal test for pip is ‘majority of days’, meaning over 50% of the time.

We tend to see that when clients answer based on worst days, it then becomes obvious at assessment that they don’t have those needs over 50% of the time, leading to awards being declined. It’s fine to talk about the worst days but if they don’t meet the ‘majority of days’ test, they don’t get taken into account unfortunately. What’s important is to outline the claimant’s needs on the majority of days and how they meet the criteria.

I’ll pm you as we’re a small company and it’s super outing!

It is fine to include historical evidence. Obviously more recent is better, but I included ten year old evidence with my own child’s claim

My dd is the same age. It’s a very difficult age for them I think. And an age where their peers are becoming much more independent, and it becomes far more isolating to need a parent with them.

Thanks for the clarification. So worst days is ok only if that is over 50% of the time. Which it is for us. We never had to go for an assessment luckily.