The true cost of lack of support for PDA children and their families

*Trigger warning – This post contains mentions of suicide and mistreatment at the hands of authorities.

Those who follow my blog may of noticed a dramatic decline in the regularity of my posts of late, the truth is I am not well…

That is to say I have been having some worrying symptoms which are being investigated and I am waiting on an appointment with the neurologist as the indications are that it has a neurological cause. In the mean time I am easily fatigued, often in discomfort and suffer from terrible brain fog much of the time so I am concentrating the majority of my energy on my son. Possible diagnoses have been banded about the most likely seemly being Fibromyalgia or Multiple Sclerosis, but equally it could be ME or have a basis in some sort of anxiety. What is a common factor in all of these conditions is one of the triggers being deep emotional stress.

Now I am not a parent who feels hard done by having an autistic/PDA child, no I celebrate him for all he is and he brings me great joy. However to get where I am to day, to have to find my own path with no support (in fact the opposite of support) has caused me more stress and distress than any other life event including divorce and the loss of my first child. I am not saying the process of diagnoses and the school system was worse than the loss of my child just that the amount of stress was greater.

So profound in fact was the stress I suffered that a section of my hair turned grey literally overnight.

The 5 year wait for diagnoses I had never heard of PDA and had no idea how to support my son or why he was hitting out. There was a constant fight to prove that there was an issue at all including trips to schools multiple times a week because my primary age child was self harming and saying he wanted to die. Not only did no one listen, they wrote him off, wrote me off, attacked me, bullied me and threatened me with everything from social services to prosecution. As a result for at least a couple of years I barely slept and suffered from panic attacks (something I had never experienced before).

I can not help but think that these factors have contributed towards whatever it is that is ailing me now, now I have time and space to react to that past trauma, now that I don’t have to spend everyday fighting on behalf of my son.

What’s more I do not feel I am alone in this. I have noticed how many parents in support groups talk about their deteriorating mental and physical health, ME and Fibromyalgia seem comparatively common in parents of autistic, PDA presenting children as is depression and anxiety. I will never forget talking to a lady on a forum one day about how her son had (yet again) been turned away when she had requested an assessment and as I was speaking to her she attempted to take her own life. The worse thing of all is the feeling you have failed your child or that in some way it is all your fault, something professionals all too often promote either directly or indirectly.

I worry now that if I become sicker who will care for my son?

No one else has taken the time to understand him and few professionals have a good understanding of PDA. Respite is virtually non existent in most areas even if they did, so what will become of us? If my son (god forbid and over my dead body) had to go into full time care it would be expensive so I ask myself why do the powers that be treat parents and autistic children in this shoddy, short sighted way? Why do they not put the money into faster diagnoses and better support and services?

When I started off on the route to get my son diagnosed 8 years ago I had a job, a relationship, and good health, ie I was a self supporting person with reasonable prospects.

My child was still autistic then (just not diagnosed) yet with no mental health issues. 5 years later I had no job, no relationship and deteriorating physical and mental health. My son’s mental health had also deteriorated due to lack of appropriate support in education and he is not able to attend school meaning his future earning potential and potential for good mental health as he gets older may be compromised.

With the help of other parents and the PDA society I eventually found a way forward for me and my son but now, likely as a result of what we have been through, we are in a situation where it is possible in the future I will need a carer myself…..

Just on a purely long term financial point of view the system is madness.

So I say to the powers that be, stop taking away our future health and well-being. Please recognise PDA, support our children, listen to our concerns, fund services because in the long run that will be better (and cheaper) for everyone.

Right now official attitudes towards PDA are making me, and parents like me, sick.

24 thoughts on “The true cost of lack of support for PDA children and their families

  1. I’m so sorry to hear of your health problems, and I hope that the medical investigations can help in some way. I too have a lot of similar symptoms, but when I went to the dr in the summer I was found to be aneamic, so most of my symptoms were then put down to that. However, I’m no longer aneamic but still feel exhaustion, brain fog, achey joints etc.
    I think what you describe probably applies to special needs parenting in general in many ways, even if there are specific PDA related issues as you describe. Our boy is autistic, and although demant avoidant, I wouldn’t say PDA. Either way, I’ve had the same thoughts that you express here, about how much more expensive it is for society to pay outsiders to care for someone, and how it doesn’t make sense to not offer more support. Because as you say, it most likely means that before too long there will be two people in need of care. Two people who will cost more and have less fulfilling lives than could have been the case with better support and understanding. It’s a ’lose-lose’ situation, frustratingly.
    Big hugs and best wishes for some improvements, in one way or another xx

    Liked by 1 person

    1. Yes absolutely and actually I started off writing this in more general terms however as I was getting it down I realised that it is often so much more of a fight and parents blamed when it is PDA as it is a) not widely recognised b) not understood c) PDAers do not respond well to the usual go to strategies for autism d) it’s surface similarities ODD or attachment disorder means parents are fair more likely to have to disprove accusations . To this day my son has a diagnoses of ASD although it was acknowledged verbally he has PDA and even that took an 5 year fight. Should I die or no longer be able to care for him and his dad could not have him full time then he would be supported using classic ASD strategies which would not support him at all. I am not saying we have it worse, just really that SEND children who present atypically often have additional or longer lasting stresses to deal with but it is a rare SEND parent who is getting enough support as you say anyway x

      Liked by 1 person

      1. I think we have gone too much towards mainstream. I feel a better collection of special schools would be more supportive . It maybe that some be appropriate for residential. A wider ability range offered. I believe the kids should be home for weekends and holidays. A chance for families to truly share the care and have time out. For care/ respite to be linked with the schools/college. Also for health to be linked in with the geographical setting too.

        You then get people looking after your kids that actually have an interest in the special needs. Also these people get to constantly experience some of the challenges…. especially if taking out into the local communities. I know some youngsters in their late twenties doing so well after attending specialist placements . Some borders state that they got. Glances to experience activities they’d never of had the chance to if had been at home.

        I just wonder if we are trying to make a system work for all? Observing it seems to be failing. Just a thought 🌷

        Liked by 1 person

  2. Oh my goodness my daughter was statemented with asd, adhd and hypermobilty after 9 years of waiting for doctors not to judge me! I went on three parenting courses! Had to fight fir my daughter not to be medicated or referred to special school!
    Now my daughter has support in her mainstream school and is doing very well Mums really do know best for there child! Keep on going mums ur doing great! Xxx

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  3. A lot of your symptoms sound like mine and I was diagnosed with Pernicious Anaemia which is where you can’t absorb vitamin B12 from food. Please get your B12, folate and ferritin levels checked.

    Liked by 1 person

    1. Thank you. I have already had a lot of blood tests and know they did iron but I will ask my doctor about B12 as I am not sure if they checked for that, thank you for taking the time to comment. X

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      1. They may have tested for iron via hematoctrit but may not have tested ferritin levels. Two different tests here in the US.

        Liked by 1 person

      2. I have just read this and I’m shouting B12 at the screen!!! Brain fog, grey hair, fatigue, aches and pains….. I was undiagnosed (and so untreated) for 15 years. A lot of the damage has reversed with 8 years of effective treatment, but not all of it. Happy to correspond if you wish.

        Liked by 1 person

      3. Thank you I was tested for B12 and have since been diagnosed with fibromyalgia. I am glad you have found the cause of your illness. Good diet, exercise and regular counselling (as well as medication) have improved my symptoms no end.

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  4. My love, this post has really touched my heart and I know how hard it must have been to write this raw and personal story. The fact that you have, the deep cost on yourself, you are still able to help so many others who walk beside you. I will personally message you in a mo too, but for the record, you are one brave and wonderful lady who I have the utmost respect for. This post needs to be shared far and wide. Our voices will be heard and your suffering will not be in vain. In the meantime, I send you well wishes for your health and well being. x. x

    Liked by 1 person

    1. Thank you Mel especially for understanding how hard this post was to write and share, I actually deleted once and went back and dug it out of the trash pile after reading about yet another parent in a similar situation, left health issues after a long period of high stress which caused PTSD. I am ok in myself really, I love the relationship I have with my son now and none of the possible diagnoses will be life limiting so I can continue to be here for him which is what is important. Thank you so much for understanding and your kind words though, it means a lot x

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  5. Spectrum Full of Love Mar 31, 2019 — 4:23 am

    You again have expressed how many of us feel and what we deal with on a daily basis, no matter where we are in the world. Sending healing thoughts and prayers your way.

    Liked by 1 person

    1. Thank you, I have been really moved by all the messages I have had from mothers saying they have experienced similar. I am
      Sorry that this has happened to so many bit glad that the post was relatable to others.
      Thank you so much for your kind words x

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  6. Sending you hugs. This is so so tough. The process parents need to go through is a disgrace. It often seems more about budgetary constraints than the needs of the kids. Take care.

    Liked by 1 person

    1. Thank you. You are so right. It does seem to be all about the money at the expense of the humans. Whatever it may of cost me it is worth it to see my son happy and engaged these days, it shouldn’t have to be this way though.

      Liked by 1 person

  7. This could be our story. You have my empathies. Leaving aside emotion sometimes, I too question the economic cost, to us and to society, of current strategies to do everything to avoid providing extra help. We’re finally getting people to notice, now that my daughter is 12 and not actively engaged in her education, but only because we had to get the police and child services involved due to her violent outbursts. I’ve been fighting for urgent help since she was 7 and began self-harming. It shouldn’t be like this. Sending spoons.

    Liked by 1 person

  8. I’ve just read this and it really resonates on every level as a therapist working with ASD young people with mental health difficulties and the systemic lack of understanding or at times, down right ignorance has left me depleted of energy to keep ‘shouting’ on behalf of children. I realised I was showing symptoms of secondary trauma from being able to empathise what it must be like for the child, and feel that shared sense of abandonment when services were not available, so keep resting, keep shouting and hope you recover with the right support.

    Liked by 1 person

    1. I am sorry to hear you have suffered in this way as a result of the great work you are doing. Since I wrote this I was diagnosed with fibromyalgia and with diet, exercise and regular counselling I am feeling much better. Most importantly my son continues to thrive in home ed and it does my heart good to see him blossom and grow. Thanks for reading and commenting.

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  9. Totally agree with your blog – Our son has a diagnosis of High functioning autism but has shown strong PDA traits for the last 4 years. We have been lied to by his former school, refused appointments with specialists who don’t want to know due to the fact he already has a diagnosis, bullied and ostracised by parents at his school and initially turned down for an EHCP which I had to battle for. Two years ago I had to give up a part time job I loved to support him through terrible school anxiety and refusal ( he is now being home educated) We have just moved back to Cornwall to be nearer family and within six week of moving I received a shock diagnosis of breast cancer (slim, vegetarian, never smoked or drank to excess and 46 years of age) I realise that no one will ever know for sure why my body developed cancer but I do believe that the stress over the last 4 years has weakened my immune system and meant that it couldn’t switch those rogue cancer cells off. Looking after a child with special needs whilst going through weekly chemotherapy is no easy task. It’s so hard to make time for yourself but this is my wake up call! xx

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    1. Oh wow. I hope the treatment is going well and the prognosis is positive. Of course we can never know the true cause of our illness but stress is know to contribute to or worsen so many health issues it must play a part. I hope you are finding some piece now and your son is thriving in the new home ed environment. Thanks for taking the time to read and comment x

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  10. Brain fog can be from a number of things but get your vitamin levels checked & find out if your *insulin* (not necessarily blood sugar) levels are high. Low B vitamins & high insulin cause brain fog like crazy. A B12 shot is relatively cheap (~$25) even w/o insurance.

    If you take any kind of anti-acid/reflux med or a blood pressure med, supplement (yes, $, I know!) with the vitamins they can reduce.

    If everything hurts, look into vitamin K2 with vit D. It fixed my systemic tendinitis, sore feet/knees/hands & slow skin healing. I also need hyaluronic acid for stiff joints.

    If you need to take Magnesium, try the Malate form. The oxide causes diarrhea. If you try a daily vit K2 or one B12 shot, you will know within the week if they will be helpful to you.

    Whether or not my info is useful to you, I know how overwhelmingly frustrating it is being at a place where you feel terrible & docs have no idea what to do (except the D/B12 deficiency, the 9th doc I saw figured that out…).

    I’m not a doc but whenever I hear “brain fog” I mention testing for high insulin levels (see an endocrinologist) because that’s what makes me unable to work. (Metformin helps brain fog when I can keep it down but makes my hair fall out.)

    This internet stranger wishes you & yours the best.

    Liked by 1 person

    1. Thanks so much. I have since been diagnosed with fibromyalgia and found a system of treatment and lifestyle that works well for me and I am feeling so much better. I really appreciate you taking the time to write me this advice and may try some of the supplements you suggest as well. I hope your own health is better now.

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  11. It deeply saddens me each and every time I share in yet another families distress at the hands of a cold ‘failing system’. If someone had taken me aside no more than 2-3 yrs ago and said “things are going to get better”, I’d never have believed them. We were so ‘stuck’ and the ‘cost’ that you talk about in your brave story is individual to each unsupported family striving to get PDA recognised, understood and appropriately provided for; the cost is far from anything the system can comprehend. Thankfully my physical and mental health, well-being and relationships have survived, though at times I cannot quite understand how. But the Mummagrizzlybear family are very much into a new phase; a life where we thrive and not just survive; there is new happiness and calm where there once was a battle and my faith has been restored in knowing that there is always a light at the end of any tunnel. I’ll be sure to shine the torch your way, knowing all too well how isolating the journey can be. You are in my thoughts x

    Liked by 1 person

    1. This post was written almost a year ago now and things are much better. I have been diagnosed with fibromyalgia and with the help of meds, diet and exercise and regular counselling it is under control. My son is thriving in home education and happy and healthy. All of that though doesn’t change the fact that things were made so hard for us, not only was no support given but the opposite of support for both me and my son. I will keep advocating for change because parents and children should not have to go through this which is why I wrote the post, not for personal sympathy. Thanks so much for your kind words. X

      Like

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