Private support options for my 5 year old son (ASD/PDA)

[Authentic2020]

I'm looking for some guidance on finding the right support for my 5-year-old son. We’re currently waiting for an NHS assessment, as we suspect he is neurodivergent—likely on the autism spectrum, possibly with a PDA (Pathological Demand Avoidance) profile.

Unfortunately, the waiting list is around two years, and in the meantime, we’re looking for private support to help us understand and manage his behaviours.
He has a massive difficulty with emotional regulation, often becoming explosive at home with shouting, throwing objects, and occasionally biting. However, he presents as "quiet and shy" at school, which makes it even trickier to identify triggers and understand what he needs.

At this point, I’m unsure what kind of support would be the best fit. We're considering two options:
Psychological Therapy - The private clinic nearby offers 12 sessions with an initial assessment. Has anyone had experience with this, and do you feel it’s effective for understanding behaviour triggers and learning strategies?
(The clinic also offers full ASD assessment but we would rather wait for NHS assessment)

Play-Based Therapy - I’m also considering this approach but am unsure how it compares to psychological therapy for children with suspected PDA.
Ideally, I'd love to find a specialist experienced in PDA who could help us better understand his needs and give us practical tools for managing his behaviours.

For now, we’re holding off on a private ASD assessment, as we’re hoping to proceed with the NHS but perhaps the private one would be more thorough?

Any advice on what approach might be more effective, or recommendations for finding a practitioner experienced with PDA, would be very much appreciated.

Would it make sense to move my post to a different topic or category for more visibility?

An independent ASD assessment doesn’t always mean a more in-depth assessment.

Play therapy is a type of psychotherapy.

Does DS have an EHCP? If not, I would target your money on securing a comprehensive EHCP. For example, if you have to appeal, potentially more than once, you may need ed psych, OT, SALT, clinical psychologist assessments. Assessments such as ed psych, OT and SALT will help you understand DS’s needs better and have recommendations on the support required. Appearing to cope at school and exploding at home signifies unmet needs at school. If school was easier, home life would improve too. An EHCP can help with that. An EHCP can then include ongoing therapies.

The SN boards are quieter so it takes longer to get replies but the replies you do get don’t include the awful replies lacking understanding some threads on the main boards receive.

Considering DS's age, support for you as parents is probably the first step.

We found speaking with a child psychologist helpful for understanding DS's behaviour and responding in the moment. And understanding our responses to his behaviour, which was also helpful.

If your LA offers the Early Bird (or Early Bird plus as DS is school age) to parents of kids on the pathway, that also has modules about understanding autistic behaviour.

Interventions like the Zones of Regulation and Level Up Autism can help DS recognize his own felings and, in time and with support, apply strategies to self regulate. But it's a long process. Those can be written into EHCPs.

Personally, I've found Occupational Therapy assessments and advice most helpful for understanding my own autistic DS, and for interventions that help. But every child is different.

If you haven't already, do look at the PDA Society website. Following the strategies outlined there was life changing for our whole family in terms of DS' emotional regulation and his ability to access school. They are amazing. It's a very different non hierarchical approach and it requires much more compromising with your child, but it is worth it. Other than that, yes definitely get the EHCP sorted and apply for DLA.

If you believe your son to have a PDA profile then I would suggest pursuing private assessment and diagnosis by a practitioner that is knowledgeable about PDA, as in my experience it is unlikely for this to be recognised via the NHS assessment route since it is not yet in the DSM (official diagnostic manual which clinicians use for Psychiatric conditions). It's really important to have PDA recorded as part of the diagnosis (or at the least 'extreme demand avoidance'), as the strategies which are needed for PDA kids are so very different to typical Autism strategies. In fact typical Autism strategies can cause harm to PDAers. It sounds like your son is high masking at school (fawning threat response) and then letting it all out when he gets home to his safe space (after school restraint collapse). If he carries on like that without significant supports being put in place, things will likely get worse and worse until he can't do it anymore and burns out (speaking from experience with my PDAer child and that research by the PDA Society shows that 70% of PDA kids are unable to access education). After getting official recognition through a diagnosis I would recommend getting an OT assessment by a Specialist OT trained in Sensory Integration, an assessment by an Educational Psychologist who has knowledge of PDA, high masking and school based trauma, and a SaLT assessment by someone who is experienced in the PDA presentation. All these can be used as evidence for an EHCP which you can apply for yourself if you would prefer. Good luck - it's a hard road to tread but knowledge and the confidence to advocate for your child's needs are key.

In terms of ongoing support/therapy options, it will be likely that the professional assessments I mentioned above can point to what is most appropriate for your child. For example, Interoception Awareness work may help him to better understand and detect his emotions and link them to his bodily sensations. Interoceptive awareness is the foundation of self regulation and the bridge between coregulation and self regulation. If you want to learn more I would recommend Kelly Mahler's website and Social Media. In terms of learning about how best to support your child at home and in school - recommended resources are PDA Society, Robyn Gobbel, Naomi Fisher, Eliza Fricker, Ross Greene, Clare Truman, Laura Kerbey, Amanda Diekman, At Peace Parents, Linda Murphy, Kristy Forbes, and Sunshine Academy.

Personally, I wouldn’t wait for independent assessments before requesting an EHNCA. Anyone good who can write a comprehensive report for Tribunal and has SENDIST experience, which is what you need if you plan to request an EHCNA, will have a waiting list and you don’t want to delay requesting an EHCNA.

Also, if you have assessments now, if you do have to appeal, potentially more than once, by the time you get to a hearing, the report may well be considered out of date. In the past, SENDIST often considered reports up to date for around 2 years, but over the last few years, SENDIST has considered reports much younger out of date.

The costs of them can also mount up, so unless money is no object, it is wise to save you money to see where you need to target your money in case an appeal is required. For example, if the LA e.g. agree to assess but not issue you may decide you desperately need to target your money at e.g. independent OT and SALT reports and the LA EP report will do (not brilliant but satisfactory compared to the need to get independent SALT and OT).

I can see your point @BrightYellowTrain , however it depends on the OP's LA. Having gone through the process in the past year and having provided all the specialist reports, for us we found the EHCP process was greatly speeded up as we never had to appeal (they could not refuse to assess or issue given the evidence) and also there is a huge backlog for LA EP's in our area and up and down the UK from what I understand (we would still be waiting if we hadn't commissioned our own). Also the EHCP was of a much higher quality in my opinion, as PDA isn't widely understood yet amongst professionals. As we were able to screen providers before we commissioned them, we were able to make sure we used only those who were knowledgeable and experienced, which was then reflected in the reports with sections of the content being copied and pasted into the draft EHCP. Unfortunately for us the bottle neck has come in being able to finalise the plan as we have been struggling to get the LA to agree to name and fund the Specialist provision needed even though all other schools consulted with say they are unable to meet needs. But that's the LA ignoring content of the EHCP and blocking us accessing the required provision, not down to the EHCP content being unfit. So we will likely end up at Tribunal anyway, but at least a strong EHCP draft will hopefully stand us in good stead in front of the judge.

they could not refuse to assess or issue given the evidence

Oh they could. Not lawfully, no. But LAs act unlawfully every day, including when there is significant evidence. It is why the vast majority of appeals are upheld. Just because you didn’t have to appeal doesn’t mean many do not, even with significant evidence.

there is a huge backlog for LA EP's in our area and up and down the UK from what I understand.

The EHCP process is governed by statutory timescales. Parents can force the LA to act via JR if necessary. They do not have to accept the LA acting unlawfully. If LAs genuinely cannot assess in-house within the timescales, they must commission independent assessments.

the EHCP was of a much higher quality in my opinion, as PDA isn't widely understood yet amongst professionals and as we were able to screen providers before we commissioned them, we were able to make sure we used only those who were knowledgeable and experienced.

Many people have to appeal to get a comprehensive watertight EHCP regardless of what evidence they bring to the table. Again, LAs act unlawfully all the time. Having independent reports prior to requesting an EHCNA does not mean you are guaranteed a watertight EHCP without having to appeal (potentially more than once). Not seeking independent assessments prior to an EHCNA request doesn’t prevent someone seeking reports from professionals with PDA and SENDIST experience at a different point in time.

If the LA is delaying finalising, you can force them to act. Send IPSEA’s model letter to the DCS. If that doesn’t work, you need a pre-action letter. SOSSEN can help with this free-of-charge. Although there is a wait so you may want to look elsewhere. If that fails, JR proceedings themselves will resolve the matter.

Section I is the logical conclusion of B&F. If you have to appeal I, it is recommended you also appeal B&F. It is rare B&F don’t need improvement anyway regardless of I or not.

And your example illustrates my point perfectly.

OP looks for professionals to assess prior to requesting an EHCNA. Good ones with SENDIST experience don’t have space for months unless you are lucky with cancellations (the chances of that for multiple good professionals is slim). She gets the reports and requests an EHCNA 1 week later. The LA takes 6 weeks to agree to assess and another 14 to agree to issue and finalise. She then needs to appeal BFI and takes a month to submit her appeal. The appeal hearing is e.g. 14/15 months away. Her evidence could well be considered out of date by the time she gets to a hearing. So she has the added expense of reassessment or asking the professionals if they will write an addendum.

I'm just describing my experience going through the process in the past year. Obviously there are different ways to approach the situation strategically speaking and it will be up to the OP to determine what course of action would be appropriate given their specific situation both personally and locally. @Authentic2020 I would advise reaching out to some local groups of parents of PDAers on Social Media, if available, and ask for some advice on there as to people's experiences with your LA so you can feel more informed. I did this and hence came to the conclusion I did about best course of action. Also I was able to ask for recommendations of local providers for the professional assessments who were PDA friendly and who had in the past had their reports accepted by my LA. Also I asked the EP, OT and SaLT to clearly include separate sections in their reports for needs, outcomes and provision, all clearly specified and laid out in same table format as the EHCP template, so our LA Case Manager had an easy time copying and pasting the information over into the draft EHCP. For reference, EHCP contains sections for Education, Health and Social Care. The education section is split into (1) Cognition and Learning (for us came from EP report); (2) Communication and Interaction (for us came from SaLT and EP reports); (3) Sensory and Physical (for us came from OT report); and (4) Social, Emotional and Mental Health (for us came from EP, SaLT and OT reports). Health section for us included information from the Assessment Team who diagnosed plus also our Paediatrician.

Obviously it is up to the OP what she does. I was posting my advice based on years of supporting parents of disabled children across the country. OP posted a thread, can read, take what she wants, ignores what she doesn’t. No-one is forcing her to do anything.

Following for advice

I disagree with brightyellowtrain. We got all reports just before ehcpna submission (Ed psych, ot, salt, diagnoses for dyslexia and asd all within 3months-ish). The case was watertight, the recommendations from healthcare professionals copied and pasted. Made process extremely easy.

I think doing it that way reduced a lot of the back and forth. In these days where people log into a system and can fire off an assessment for anything, I think having hundred s of pages of reports and assessments attached helps sort the real cases from the "I think my son might need extra help", types. A bit like when company's get hundreds of cvs and they dismiss 70% because they don't like the font/ spelling mistakes etc. I just think it makes them take things more seriously. And yes, SENDIASS aren't independent, but they have a back door to the assessors and put in good words all the time I believe. So use them. Sadly, it's about playing the system. Keeping calm and having your ducks in a row goes a very long way. I think it cuts timelines significantly and for us, it was an easy/ non-stressful experience as we knew our case was so strong.

I have a dd who is nearly 5 and I suspect that she has autism with PDA profile. The one thing to know is that PDA behaviours all come from anxiety. I have learned a lot by watching ‘At Peace Parents’ on YouTube - a lady called Casey in the US who parents a son with PDA. Her advice has been very helpful and she also runs courses for parents who needs help and strategies for their child.

We sent our daughter to a very small school. Her class only has 5 other children, which suits her because I don’t think she’d be able to cope with 29 other opinions. At the moment, she’s very happy at school but if this school were to close (God forbid) there is not a setting that I feel we could put her in in my town and we’d probably have to homeschool.

PDA is so much more complex to deal with.

In terms of what things I have found helpful with my dd.

She gets very easily triggered by certain words or suggestions so we are careful how we phrase things to her.

She responds very well to humour and copes better if I try to remember to have a big smile on my face when I’m talking to her which reassures her (not easy to remember to do as I’m autistic myself 🤣)

I often find that by making a request / demand less direct, I get a better result. Such as pretending to be one of her cuddly toys when speaking to her.

He has a massive difficulty with emotional regulation, often becoming explosive at home with shouting, throwing objects, and occasionally biting. However, he presents as "quiet and shy" at school, which makes it even trickier to identify triggers and understand what he needs.

He may realise that he is safe to let his stress out at home and is quiet and shy at school because he knows he has to try to contain behaviours, there. But over time, this could lead to burnout.

Feel free to disagree. It would be a boring world if everyone thought the same. I am giving my advice based on years of supporting thousands parents of disabled DC. It’s a forum. People can read and make their own decisions. That's how a forum works. As I posted, having watertight evidence and a strong case does not prevent needing to appeal. If it did, the success rate of appeals wouldn’t be over 98% and there wouldn’t be so many parents looking at JR. It is very unusual to be able to secure multiple medico-legal standard assessments within 3 months these days. Anyone good with SENDIST experience has a long waiting list, so you would be reliant on being offered multiple cancellations.

Use them. Yes, but be careful. Parents absolutely need to know SENDIASS often give incorrect information. In many areas, they repeat the LA’s unlawful policies. Playing the system means understanding LAs often act unlawfully and SENDIASS often repeats that. If parents don't know and understand that, they risk believing incorrect information. For correct information about the actual law, ISPEA and SOSSEN are far better sources.

I am pleased you managed to find someone to write a tribunal standard report so quickly after you got the independent report that had unenforceable woolly and vague wording such as ‘as soon as possible and as frequently as possible’. Tribunal standard reports would not include such wording. Even ‘will require’ would be ‘must receive’. And the qualifications of said teacher would be included - for example, is a level 5 or level 7 SpLD qualification required. That must have been a relief after spending years working on the EHCNA request with the school.

My grandson is waiting for diagnosis, but has an IEP for behavior. I think it is PDA. Today I took him to school, pre k special Ed. He refused to go in and begged me to let him skip school. I am grandma and thought if I give in it may create a continuous issue. With the help of staff I was able to carry him to the classroom. Last year he had fewer issues. He has had 2 weeks off for Chistmas with an additional week off for snow days. Then just had another 4 snow days. I felt terrible forcing him to go. I only have him 2 days a week, but I am almost 70. I am so worried. He cusses like a sailor and can sometimes get physical with me or his little brother. He only goes half day now. Next year full time kindergarten. I just don't know how he will handle it. Currently there are only 4 kids in his class. Any advice?
Nana

@Catgma you would be better starting your own thread.

It might help DGS’s parents to find a support group or charity in whatever country you are in who would be able to support them to get more support for DGS.