My five year old just got an ASD diagnosis - how do I get family and friends to listen and understand

[ruthietoothie]

Hi there

My son is five and had an incredibly rocky start to school, including serious and violent meltdowns and the school trying to informally exclude him . He's now got an ASD diagnosis with a demand avoidance profile.

I really want to use this diagnosis to help us get help for him and better understanding from his care givers (family and school staff both).

But my parents are quite old fashioned and think ND is a fad... And that my son is just a naughty boy. I don't know how to help them understand that it is real or how to beat advocate for him to get more support.

Does anyone have any resources or materials they would recommend? Or tips for how I push school to do more / better? Also any reflections on how to help him process trauma connected with him being told in reception that he was making the wrong choices.

Thank you!!

Would your parents look at the PDA society’s website?

For support in school, have you spoken to the SENCO? What support are they currently providing? Does DS have an EHCP?

Ensuring the environment meets DS’s needs/he receives the support he needs can help trauma. As can therapies. And time.

Hello there, I'm sorry you're dealing with a difficult situation. To answer your questions. Your son might benefit from a social story focused on explaining what autism is, and that it's okay when our brain works in a unique way. A social story can be an effective way to achieve this, as it links words with visuals, which is often the preferred way of learning and understanding for many autistic children. Additionally, you could explore various tools and approaches to support him (few examples are: visual communication resources, emotional regulation charts, behaviour reinforcement/reduction tools, timetables. Also consider his nutrition, sleeping patterns, daily routines; explore sensory-seeking strategies). There is a vast array of strategies and approaches available; it's all about discovering the one or several that resonate best with your child.
I’m not sure if sharing links is permitted, but if you send me a private message, I can share a few with you. Hope it helps.

Thanks so much @EndlessLight and @VoiceinPics

He doesn't have an ehcp ATM and school would argue he is doing all right with quality first teaching. I sent the senco the ASD diagnosistic report about ten days ago and asked for a meeting and they asked for time to read the report and haven't come back yet. My experience so far is that they tend to see his needs more in terms of problematic behaviour rather than thinking creatively about how he might access support.

I could show my parents the PDA website but also saw some commentary on here that said that it rather pathologises stuff and may not always be so helpful....

@VoiceinPics some links would be amazing. I'll send a DM. I'm wanting to tell his older siblings about the diagnosis but also feels unfair to tell them and not him.

I'm a bit overwhelmed with it all I think...

You should request an EHCNA yourself. On their website, IPSEA has s model letter you can use. Ignore the school trying to put you off. If DS was mama going they would not be trying to informally exclude. You should put a stop to that too. It is unlawful. Inform the school you will not be collecting DS early unless they formally suspend.

I quite like "Can I tell you about Asperger syndrome". The title's out of date but it fit my son better than the autism one.

My parents are still in denial and refused to read any sort of resources so it hasn't actually worked in our case, but I still think the book is decent. You can read it in about 15 mins so it looks expensive for what it is, but I think actually the condensed format makes it more useful for the purposes of grandparents and siblings.

PDA is incredibly challenging to work with in mainstream. There's no way round the routines and constraints of a structured school day.

It's essentially the opposite of how you work with a child with ASD too. All the visual timetables and sticking to routines can be perceived pressure to a child with PDA.

I'd be looking for a suitable SEN school pronto.

I would also say that whilst the naughty label isn't helpful to your son, the "behaviour" can be defined that way. Understanding that he can't break or hurt things or people is as important as anything else. If the grandparents understand that rationale they can get onside with helping your DS manage his behaviour.

My parents and DSis have never got there I'm afraid! My mum thinks it's "a label" and my sister ignores it.

DC is 4 years on from diagnosis...

Tbh I have limited the amount we see them because of this. It's not fair on DC to have to mask so much.

Ironically, I suspect my eldest niece is autistic and perhaps my DSis too...

I just read a book called "Black Rainbow" (Jata-Hall). It's billed as a novel but seems to be a thinly veiled account of the author's experiences of PDA parenting. You might find some useful stuff in it. It's not brilliantly written but comes from the heart.

I quite liked the "Can You See Me?" series by Libby Scott for an account of the autistic experience from an (older) child's POV.

Oh and once you embark on the EHCP process, expect baffled incomprehension from anyone who hasn't been through that, as well!

Hello, we have a 5 year old boy who also hasn’t been able to manage the structures and routines of mainstream indie school due to PDA. Happy to chat as we are in same boat and can navigate the choppy waters together! We have had request for assessment accepted, applied for EHCP but heard nothing. Spoke to various SENCOs to establish how little they can do without one. We aren’t risking it- we are lucky to have time to home educate if need be and have seen all the terrifying stories about trauma from mainstream. Working with OT, psych, and a good low demand nursery. May even delay edu to 6/7 if we cannot get the right place. I don’t really want to home school long term…

@Angliski when did you submit an EHCNA request to the LA? If it was longer than 6 weeks ago, have you sent the relevant model letter on IPSEA’s website to the Director of Children’s Services?