My daughter is autistic with ADHD and sensory issues- there was an issue with my parenting

Dinky has been diagnosed with autistic spectrum disorder-pathological demand avoidance, attention deficit hyperactivity disorder and sensory integration difficulties (also known as sensory processing disorder).

Or for short 


Here in the UK there is a documentary series called ‘Born Naughty?’ (Click here for some info on the programme which features children with ASD-PDA) 
 There are so many comments like :

 ‘No child is born naughty-it is a parenting issue.’

To an extent they have a point, but not in the way they think… Let me explain…

There was an issue with my parenting… I was made to believe that the only right parenting strategies were those for typically developing children. That was mistake number 1.

I read up on challenging children, watched supernanny and implemented lots of new behavioural strategies. They didn’t work. 

Then I found out about PDA, had my lightbulb moment and this came with new parenting strategies, ones I hadn’t tried. I had spent so long using the wrong parenting strategies, I was parenting wrong! 

I needed to be parenting for an autistic child with PDA!

I changed my parenting, I made lots of visuals, gave her different ways to communicate when she couldn’t, changed my wording when I needed her co operation, I gave her choices within her routine, and allowed her to feel more in control.

What a difference! School though we’re still using the wrong strategies, she wasn’t learning, she was labelled ‘naughty’, they refused to use the ASD-PDA strategies in favour of typical strategies and even worse, strategies for behavioural disorders, which had the opposite effect. The only reason she was seen as naughty was due to the ignorant assumption that the behaviour is just naughtiness rather than another form of communication, and they blamed her for their strategies not working. When in reality if you have tried to teach a child something 100 times and they still haven’t got it, it is not the child that is the slow learner. Thinking that there is nothing you can change about the way you deal with behaviour is the biggest mistake one can make.

Meltdowns in public started to make sense since the sensory integration was identified and I changed my parenting. I gave her ear defenders and sunglasses, I allowed her to engage in her sensory seeking and just made sure it was safe, instead of getting upset and telling her off for spinning or bouncing when people glared as she was expected to be still. I learnt to ignore people more, children should be allowed to move and spin and bounce and flap!

Dinky then got her ASD-PDA diagnosis and now goes to a special school, things are so much better, the right strategies are being put into place. She is no longer labelled ‘naughty’. She is treated like a child with ASD-PDA, ADHD and sensory integration difficulties! 

Now she has the ADHD diagnosis, I have put in more activies in our routine to help release some of that built up energy. She is on medication and can now concentrate and is learning in school with the right strategies that take all of her diagnoses into account. 

You wouldn’t use parenting strategies for a 15 year old on a toddler, or toddler strategies on a 15 year old, so why use strategies for typically developing children with children with a diagnosed neurological condition? 

This is why I hate diagnosis of neurological conditions being called ‘labels’, it suggests that is the end of it. It isn’t … It is the beginning. It is a signpost to the right strategies.

So yes, it is a parenting issue that only diagnosis and understanding can solve. 

No child is ‘born naughty’!

PDA awareness day and Dinkys annual review shows that awareness is sorely needed! 

I had Dinkys annual review yesterday. 

Parents evenings in both mainstream schools haven’t exactly gone down very well. Actually I only got invited to one, and they just handed me her ‘suspected levels’ at a TAC meeting in the second mainstream. Dinky’s PDA was hindering her progress, and no one could tell how much. 

So 1st annual review. A room full of people from the special school, the social worker and dinky. 

It was rather nice having Dinky in the room, she was only staying for a little while, she kept saying “mummy” and touching my arm. She was very excited to have me at school! 

Once settled, the principal got everyone to write one thing they admired about Dinky, one thing they thought was working well, and one thing they felt Dinky could work on for the next annual review. 

It was nice to hear everyone say Dinky made them laugh and has a cheeky grin, and helps the other learners sometimes. It was interesting to hear that actually her writing is considered good by the head of key stage (I will come to that later), and although half the room praised her joining in, apparently she needs to attend more of her speech therapy sessions! Her teacher said she needed to push herself, which Dinky completely misunderstood and put her hands on her chest and pushed herself backwards several times, which raised a chuckle across the room. 

We watched a slideshow of dinky in her class. Then Dinky’s views were given, dinky had been given a large piece of paper and with the teacher was asked 

What do you like best about school 

My Dinky, ever trying to give the ‘right answer’ wrote ‘yoo’ as in her teacher.

What is your favourite lesson

She wrote hoes ridia – she wouldn’t talk so her teacher helped her sign horse riding.

What lesson don’t you like 

Dinky drew some lines (pretty sure this was avoidance) the teacher wrote ‘another learner being silly’

Who are your friends

Dinky wrote her friends names, she basically missed off the child who pulls her hair and put the teacher on. 

Is there anything you don’t like about school

Dinky drew a picture of her with a sad face being held by the wrist by an adult 

This almost had me in tears. Dinky sat there while everyone took that in, the principle said that from now on Dinkys plan will be amended and wrist restraint will no longer be used. Which is great, although I suspect the next annual review will be a picture of the double elbow.

If they insist on pushing her, they will have to restrain, it is how it works. 

Apparently everyone got to see the review pack the school prepared before the meeting, except me.

Behaviour wise, they are using pda stategies and with the more constantly used indirect language dinky is starting to trust them more, they are seeing a massive reduction in meltdowns. 11 physical interventions in March, 3 in April (although they missed the fact that April was only 2 weeks due to Easter holidays).

Just under 50% of meltdowns were due to demands, over 25% were transitions, about 10% (hard to tell on a pie chart) activity interrupted and the final 15% is other learners behaviour

Not all meltdowns are cause for physical handling, they have realised that I was right, give her space and time and she will calm faster than someone touching her. 

My views. Well, basically I was told there is no point in amending the statement because they (the LEA) won’t do it. Also despite the blatant character assassination of Dinky by her former school quoted in the current report, there is also no point in getting a new ed psych report as school don’t believe that she will engage for the ed psych as she is still not receptive to the school doing assessments. 

The school believe that possibly in 4/5 years, when Dinky reaches secondary age, she may well be able to join a mainstream if they have a special unit attached. I wasn’t expecting that kind of prediction, but I said “over my dead body will Dinky return to mainstream- I already said I didn’t want dinky in a mainstream environment, she has been in two mainstreams within 1.5 academic years, and neither suited her. She couldn’t cope with them and they couldn’t cope with her. The ONLY reason you are seeing ANY progress is because you can give her the environment she needs to learn without always knowing she is learning mainstreams, even ones with units can not hope to provide the environment you can. They will constantly push for her to join the class and Dinky can not be in a class of 30 constantly being given demands- it won’t work.” 

I was told this is a far off future thing to work towards and I said I will not work towards my child going back into an unsuitable environment. I reminded them that I have had dinky at home far longer than any school has managed so far since she reached compulsory school age! That they do not know what that was like when dinky was being excluded for walking around the school on bucket stilts, or being in the wrong place for too long, or needing a break from the classroom, in most mainstreams square pegs are thrown in the naughty bucket and left there. 

They conceded and said that it wasn’t well thought through as yes most mainstreams would love to give children the environment that this school can offer but they can’t. I said they haven’t had Dinky long enough to make any real predictions. 

When it came to speech and language, they contradicted themselves, one minute she is considered within lower normal range, then said she won’t engage so they don’t know for sure. (Reading the report they like the other two speech and language therapists before them, they didn’t do a whole test,just managed one module in one test and one module of another. The one she showed age appropriate skills she also made some errors which show Dinkys difficulties with non literal language and imagination- yet further on in the report she has a great imagination 😒) I do know that dinky isn’t as far behind as she was with speech and that is due to her weekly speech and language sessions.

When the teacher (new teacher) started talking about Dinkys participation being really good I had to hold back my tears of joy! They agree the free flowing early years style teaching suits Dinky and allows her to join in. She writes more often and is starting to make progress academically! I was overwhelmed! It’s amazing, and something I had not heard in mainstream apart from her reading. 

Her reading is above average for her age! I was so utterly proud and overwhelmed in that moment. Dinky has always been interested in reading and I have fostered that from a young age. Dinky has an amimal and lego fascination and I have brought tons of books to help teach her reading and about the animals she loves so much. 

They said Dinky was ‘able’. Yet reading the report she is roughly that of a reception age student still. It’s great that dinky doesn’t have severe learning difficulties like some of her class, but I don’t see that the small progress she has made in a term by participating allows them to believe that:

A. This period of participation will carry on, as is, throughout the next 4/5 years 

B. Dinky will be able to zoom ahead by two years to catch up with her mainstream counterparts. 

I would love to share their optimism, but their belief is contray to evidence of Dinky and PDA in general. I have had to come to terms with many things as a parent of a child with PDA and one of those is that Dinky will never be able to participate at a mainstream level appropriate to her age. To raise my hopes, without knowing the child fully is cruel. What if I was still in denial hoping for a mainstream return? Do they believe they have cured PDA? Or will cure it? No, so why? Why make these statements about a child they have known for a few months? 

I believed the fight would be over once dinky went to a special school that I wouldn’t have to explain her autism or her more specifically her PDA. Again I told by a school they understand the condition but the annual review suggests otherwise. 

This is why awareness days matter, because when a condition is little known, parents and families are given the wrong advive, impression and are let down time and time again. The only way this school are going to learn is to have dinky in their school for the next 4/5 years, watch her lose her writing ability again for the 4th or 5th time, watch her go through stages of participating and being happy to being unable to cope with any demands and being visably anxious. They will have to see that their exploitation of periods of relative calm will come back and bite them in the backside! I did say to the social worker after the review that it is ll well and good for them to say this but this is the time that the other schools started having problems, just wait until they see the second term in full swing. Maybe it won’t be until the third term when she realises that this is not a holiday camp and they start pushing her more like they said the review. 

So there is good news mixed with the not so good. The social worker said that it seems odd that her small progress is being used against her, and the social worker doesn’t feel she will cope in a unit in mainstream, she has the report from the previous social workers and the last school , she knows kids in the units and Dinky doesn’t seem suitable for them. She agreed I had very good reason to not want a return of mainstream and for what it is worth she believes I am right. the point I made I’d that Dinky is 7! Secondary is a long way off. At least they are not trying to get rid of her now. 

CAMHS appointment- dinky gets an ADHD diagnosis, CAMHS get a complaint!

I think the title already suggests that the appointment didn’t go very well…. Here is my draft complaint letter…


To whom it may concern,


I am writing to you regarding my daughter Dinky.


She was seen in CAMHS on Monday 13th April 2015. Her appointment was for 9 am.

Unfortunately what transpired during the appointment was appalling, and showed a complete lack of professionalism from Dr P’s colleague. She did not give her name at the start of the appointment, nor did she apologise for her poor time keeping, at 9am there should be no reason for a late clinic, they were 15 minutes late. actually at the start of MY daughters long awaited appointment the ADHD nurse spoke to someone else in the waiting area, telling them she is just ‘dealing with’ us and will be right with them. We obviously were not as important as her next patients, we’ve only been waiting for this appointment for nearly a year! We hadn’t even got through the door when she said that the ADHD had already been diagnosed so it shouldn’t take long. I wasn’t even aware this diagnosis had been made!

My daughter already has a diagnosis of autistic spectrum disorder from the CDC at our local hospital, and I would have expected that anyone dealing with her would know what that is, however there was no concession given for Dinky’s obvious distress at going into a new building with new people with out them even introducing themselves to her.

I was told to leave my distressed child with this person and go and speak to the consultant. Dr P was a consummate professional, he apologised for a letter not being sent to me for an important meeting, and was discussing medication for Dinky with me, when in comes this unknown person, she says she has spoken to Dinky about medication and she doesn’t want it! Well of course she doesn’t! Who gave her permission to talk to Dinky about medication in the first place? I know for certain it wasn’t me! Dinky has PDA as part of her ASD, which means you have to be careful how you approach things with her, ESPECIALLY anything that can be construed as a demand, like taking medication! I could see her getting worked up and she walked off, I thought the person was dealing with Dinky so that I can talk to the doctor, as the doctor explained to me, however this person was more interested in questioning why my daughter goes to a special school and why it is in the next county. I then try and find Dinky who has vacated the premises, and she refused to come back in. I was dealing with the situation which then turned into an uncontrolled violent breakdown from Dinky where her fight or flight response was triggered because of the direct and unwarranted interference by the person, and then just as I was calming the situation, this person felt she was best placed to tell my daughter off for her behaviour.

  1. She was the cause of this behaviour-late start, direct language, not introducing herself, discussing medication with a 7 year old autistic child, more direct language, the list goes on.
  2. Anyone with any knowledge about ASD or anxiety would know it is pointless talking to a child about the behaviour until they were calm
  3. I am Dinky’s mother! I know how to handle my child, I have been doing it on my own with no help from CAMHS for 7 years, and I will be doing it for a long time after their involvement! It was not her place to say anything. I know that once in the car I could discuss with dinky what went wrong, not berate her for having a basic human reaction to anxiety and fear!

The appointment was cut short, Dinky didn’t get her prescription for her newly diagnosed ADHD, the only outcome she recieved was high anxiety and complete overload.

Once Dinky was settled in her car seat and strapped in, we drove off, on the way back, once calm, Dinky appologised for hurting me. See, I know my daughter, she wasn’t intentionally hurting me back at CAMHS, she was in fight or flight, I know this because I am her mother and spend most of my time with her, especially when she was out of school for 11 months at was a t home full time.

I do not wish for this person to have ANY more contact with Dinky, and believe that she should be re-trained in how to talk to autistic children, and maybe clear any medication discussions with the parent or guardian before talking to a small child about it! If my daughter refuses to take the medication needed due to the ADHD nurse, I will have no choice but to take this matter further. 

 I also believe I am not only entiltled to a written apology from this person, but both myself and Dinky deserve one.

I look forward to your response within the timeframe set out by your complaints policy.


Yours sincerely


One extremely peeved mother!


Yes, so Dinky has ASD with an extra sprinkling of PDA, with a neurological side order of ADHD, SPD and sleep difficulties. But as one of my facebook PDA mum friends rightly said… I wouldn’t have her any other way. I love dinky no matter how many acronyms she has!

Dinky’s first two months in a SEN school has been a roller coaster!

if you haven’t followed our journey for long, or just joined us here at Dinky and me, you may not have read how we got here. Even the short version is long, so I will go for quick…

2 terms in first school (moved on head teachers recommendation- wrongly)

2.5 terms in second school (treated her as a naughty child)

11 months out of school (mostly spend abusing the unlimited entry to merlin attractions- chessington, legoland, sealife and London eye)

Coming up to 1 term in SEN school 

When it came to looking for a SEN school I was quite taken aback and there are so many myths and really poor advice from non-educational professionals. 

So on the one hand I was gutted that my little girl wasn’t going to see out her educational career in mainstream. 

On the other… I was pertrified she wouldn’t get into a SEN school, because I was constantly told 

  1. she wouldn’t meet the criteria for any schools. 
  2. She didn’t have BESD, 
  3. she didn’t have classic autism- ambitious about autism States: 

71% of children with autism are educated in mainstream schools and the remainder in specialist provision

 I was told the other 29% were those with associated learning difficulties or classic autism. 

    4. she didn’t seem to have a learning difficulty- but no one could assess due to her extreme demand avoidance. 

So that’s all the types of schools. 

As it turned out,  she didn’t need to have classic autism to go to an ASD/SLCN school, her level of autism and PDA was enough for her to go to a special school, and so was the fact she had made little to no progress in any area of her learning with the exception of reading. 

I was excited when I finally found a school that I thought could meet her needs. Finally a place that will understand her form of autism. 

To begin with it all went well, there was no pressure and Dinky enjoyed playing with all the adults that were happy to allow her to feel in control. She began to choose to do maths activities as they were set as games. 

Over the last few weeks we have had a mixture of brilliant or good days and  ‘positive handling notices’. Over the past two weeks especially there have been two incidents marked as serious. 

Instantly I panic. Whose fault is it? will she be kicked out? 

However it seems panicking is not nessessary, even though she picked up a blunt dinner knife and threatened two members of staff, she wasn’t excluded. I was shocked, not just that Dinky had picked up a knife (as she has NEVER done that before), but that it was seen as exactly what it was… A child who was scared, in fight or flight and who was not in control of her actions. 

Then earlier this week she headbutt two members of staff. Again this was not treated as an incident involving a naughty child. I felt that the staff could have prevented it, but they are still in trial and error mode. 

Then there are the great things. 

Dinky trying to do maths, planting potatoes, making friends- not because she is the rebel- but because the other kids like her! She gets certificates every Friday and is really starting to love school life. 

Someone said that Dinky is not the only one who seems happy with the school. It’s true, since she has been in this school I have been able to relax. I know she is safe and being looked after and I can rest. I can recover from meltdowns and the demand avoidance. I have time to go to meetings and do all the paperwork without trying to deal with Dinky aswell. 

Our weekends have become fun again. With the rest during the week I now have the energy to do thinfs like we used to.

We now have an after school routine. Dinky will come home, demand snacks, and watch a film. During the film she usually either rocks heavily against the back of the sofa of watch it completely upside down. 

She likes going on her doorway swing after dinner, and watches her iPad in her sensory den once she is ready for bed. 

We found out Dinky’s teacher is leaving next week. Normally I would be worried that this is yet another change for Dinky, however, changing teachers and schools regularly had become the norm, so the hard thing will be convincing her this school will last. 

When the teacher dropped the bombshell on the class, she apparently told him 

You can visit, not on weekends because the school is closed. Wednesday is a good day!

Later on when I went through the social story with her about it she said

Wednesday is a good day to visit.

Then she walked off. 

Today she has seemed ok with it all. 

I have been trying to sort out when Dinky’s statement is going to become an EHCP. According to our county council local offer, it is supposed to be this academic year. However the school sent out annual review paperwork. I phoned the SEN team and the caseworker had no idea what what going on. She said the changes were new and that she didn’t understand them, which is ridiculous! Parents are going on workshops to understand the changes and transition to EHCP but the SEN team doesn’t have a clue! Well, at least Dinky’s case worker didn’t, she had to ask someone else!

I had to tell her how it worked and she agreed with me. She said it was miscommunication, crossed wires, which led to the school not doing it as a transition meeting. 

So I talked to the school and found out that actually it was the SEN team that said they were too busy to do the transfer this year despite Dinky’s year group being one of the year groups to change this year. If she were to be left out, I wouldn’t have a clue when her statement would transfer to the new system. 

So now I have to start the paperwork my end in order to get the EHCP to be right. 

Dinky is going on her first proper school trip with the school next week! 

It sure has been a rollercoster these past two months, but I’m sure, at least for now, that I’ve made the right choice.