This post is primarily for those parents who are just starting out on their PDA journey. I am aware that many parents will have already done most, if not all, of the things that are suggested in this post and so I would hate to come across as know it all or patronizing to those who have already walked this journey either recently or many years before myself.
So if you have read my previous post you may be fairly confident, if not down right positive, that your child may have PDA. The road to diagnosis is a long, hard and rocky one with many a winding turn. Even if you approach everything correctly, armed with carefully detailed evidence coupled with all of your expertise and experience, as a parent, your concerns can still, frustratingly, fall on deaf ears.
Persuading any professional that you think that your child is not developing or behaving in a typical manner for a child of his or her age is always difficult. The initial reaction is that you are worrying over nothing, that you just need to stop comparing your child with others, perhaps you need to be stricter, or that he or she will grow out of it and so on.
So how is the best way to proceed if you think that your child may have PDA, how do you get anyone to believe you or to take you seriously when all that the outside world can see is a child that appears to be typical both in behaviour and presentation. How do you manage to convey the immense struggles at home when everything can appear to be so calm in other settings.
Alternatively you may have a child that can be very charming and social as well as explosive and challenging both at school and at home. This solves one problem, from the point of view that the behaviour can be seen across two settings, but good eye contact and surface sociability may mean that ASD is discounted straight away. Often leading to a less suitable pursuit of ODD or Attachment Disorder as the route cause of your child’s difficulties.
Using my experiences of what approaches and methods have worked along with those that have failed I thought that I would share a plan of action that may be fruitful on your path to diagnosis. I cannot guarantee that this plan will bring you any joy or that it will ultimately secure you a diagnosis but it may be a good framework within which to work.
One of the most important things that I have learned is that professionals do not like a parent telling them what the problem is. A well read, well researched and articulate parent can often be seeing as a nuisance, arrogant Know it all at best and a Dr Internet, label obsessive, Munchhausen by proxy nutter to be avoided at all costs at worse.
Looking back over my own experiences the services that did come to accept PDA and treat me as an equal were social services and education. I can only assume that these relationships were built on mutual respect as we worked and collaborated together to try and discover, solve and discipline the behaviour out of Mollie. This happened because I was ignorant about ASD and PDA, I was willing to follow their lead and became gradually more assertive over time. We discovered together that nothing worked and agreed together that PDA made perfect sense for her behaviours. Strong relationships and mutual respect was built during this time which has continued to serve us all well.
By the time I reached the assessment stage for Mollie and for my son a year later I had become extremely well versed on both Asperger’s and PDA. This knowledge made me dangerous, I appeared to know more about the complexities of ASD and how they may present in different individuals than the clinical psychologists did. I could argue against ridiculous statements that were made in reference to my son’s assessment, air my dissatisfaction that when I first mentioned PDA, re my daughter, that they couldn’t even be bothered to investigate such a possibility and I was able to back up my claims with facts.
The balance of the relationship had changed, I was now in charge and demanding action, how could I respect their opinions when they were wrong. The assessment process itself is not done in collaboration with parents, you are not working together with mutual respect as a team. It is a case of the professionals are the experts so you shall roll over and accept anything that they tell you. They didn’t like the fact that I obviously had lost all of my respect for them and there scandalous lack of knowledge. The Dr Internet, label obsessive, Munchhausen by proxy label had now been firmly planted on my head. I was essentially black balled from the services for at least two years and I have only recently been accepted back in.
So if we bring these two experiences together we can perhaps learn from them and develop a way to proceed forward. We need to eliminate years of ineffective and incorrect handling techniques because of the huge damage that they cause. Whilst simultaneously trying to not come across as a Dr internet, label obsessive, Munchhausen by proxy mother. We need to carefully guide and steer the professionals involved down the correct path without them knowing what we are doing.
It is imperative that they feel in control and feel respected in order for you to get the best understanding and support for your child. You need to tread carefully, know when to gently push and when to pull back, offer choices and not demands, pretend that you’re not sure or could they help you to understand, ask for their advice and opinions but don’t demand answers. Does any of this sound familiar, that’s right mum’s and dad’s we need to use our skills as PDA parents to skillfully guide the professionals into doing what we ultimately want.
Step One – Make A Case To Support Your Claims
- Write a timeline for your child’s development and behaviour from birth until the present day. At the top of my blog is a page entitled ‘Our Life With PDA’ which may provide you with a useful guide. This has not been written in hindsight but was penned as and when things were occurring and then later edited and structured into home life and school life. It is probably too long-winded and so a shorter and more concise version would be more suitable.
- If it is possible ask for someone else to support your description of your child. A short report from a teacher would be ideal however if your child flies under the radar at school a short report from a family member or friend may still be useful. The important thing is to try to emphasize that the difficulties that are arising are not just been witnessed by you.
- If your child does show challenging behaviour in school you may already be in the fortunate position of already having an array of observation sheets and reports that you can include in your file.
- Print off some information from the internet detailing PDA which can then be used as a comparable for your timeline of your child. The following diagnostic criteria may be of use to you. You could even download this document and then provide a description of your own child underneath each criteria. Key Features of PDA This is a guide only, a child does not have to meet all of the criteria in order to receive a diagnosis. The criteria that must be met is still being refined, some of the criteria is typically seen in children with PDA but may not have to be there for a diagnosis.
- It may be worth completing the following questionnaire which are questions that have been devised to highlight PDA behaviours by very well known and respected professional’s. On my previous post I have inserted a link to a completed version of this questionnaire which highlights my daughter’s profile which you may find useful. http://www.newsonline.ltd.uk/pages/pda_files/PDA_Questionnaire.pdf
So you have now made you case which you can use in the future, you may decide to use your evidence all at once or you may decide to carefully drip feed it. The important thing is that you have now laid the foundations of your case and it will be time well spent on work that you will always be able to refer back on.
Step Two – Visit The Doctors
- I know that this is a painfully long way around but within the health service there appears to be a pathway that must be followed and not deviated from.
- Share your concerns with your GP re your child’s development and that you would greatly appreciate a referral to CAMHS. There is no need to produce your evidence at this stage, GP’s won’t necessarily be interested or have the time. They are often the gateway to other services and so as long as you can express genuine reasons and concerns re your child’s complex and challenging behavior you should be able to make it to the next stage.
- If your child’s difficulties are backed up by the school then this process becomes easier still.
- It is better to request, appeal rather than demand at this stage.
- Getting from my GP’s to a CAMHS appointment is not something that I have found problematic in the past.
Step Three – CAMHS
- Either prior to arriving at CAMHS or once you do arrive you may be required to attend the obligatory parenting course. Now I know it’s insulting and I know that it will offer you absolutely zero strategies that will make any difference to your child’s behaviour. Our children simply do not fit into generic parenting courses, if they did we wouldn’t have a problem, because we have more often than not already done everything that a parenting course advocates. Unfortunately this is one of the hoops that you may need to jump through in order to progress to the next level.
- You may wish to share with your contact at CAMHS your child’s timeline and any other reports / observations from school or family members at this stage. You may just wish to inform your contact at CAMHS that you have written a timeline of your child’s difficulties incase it may be of any use to him/her either now or in the future. At this stage it is helpful if the professional feels in control and respected and that you are trying to be helpful while appearing to bow to their greater experience and knowledge.
- Attend a few appointments which allows you to verbally share more details of your difficulties and to bounce ideas of each other. You can, of course, agree to try the sticker chart only to report at the next appointment that this has in fact inflamed the situation and so on. It is important to appear to be problem solving and working together at this stage. A good relationship between you and your contact at CAMHS may be vital for your case both now and in the future.
- When the time is right innocently introduce the subject of PDA. You may say that you have been searching the internet in an effort to educate yourself with challenging behaviour and so on when you stumbled across a condition that appears to fit your child like a glove. If your child does fly under the radar at school it may be prudent to point out that this is one of the features of PDA.
- You may say that you have printed it off and made notes on how your child appears to fit this criteria and would your contact at CAMHS mind having a look at this profile in conjunction with the knowledge that they already have about your child. You may point out that you understand that this condition is not widely recognized and that it is not in a diagnostic manual but that you would value their opinion.
- At this stage CAMHS should now be in possession of your child’s development / behavioural profile, information from at least one other family member or friend collaborating with your description with your child, if you are lucky reports and observations from your child’s school and finally information on the diagnostic profile of PDA.
- Leave the information with CAMHS so that it can be read and digested at leisure.
- If CAMHS are really interested and would be thankful for more information then it may be helpful to share with them, at a later date, the following booklet http://shiggs55.files.wordpress.com/2013/04/final-blog-copy.pdf or simply direct them to http://thepdaresource.com/. The booklet can be printed off in whole or just use any relevant sections or diagrams. Try and drip feed information rather than presenting it in one job lot.
- If at this point you hit a brick wall it may be prudent to put PDA on the back burner and to allow the relationship to build. If they like you they may be more inclined to want to help you and become more open to the idea of PDA. The more dealings they have with you and your child the more you could gently perisist rather than insist that PDA be revisited as a possible option.
- If Attachment Disorder or Oppositional Defiant Disorder are explored as possible reasons for your child’s behaviours then play it cool. Read up on the two disorders and find out where your child does not fit this profile and then carefully discuss your concerns or queries regarding these two options. The following links may help to offer some understanding not only of the differences but also of the route cause. http://understandingpda.com/2013/04/17/an-informative-and-thought-provoking-reply-regarding-the-different-profiles-of-odd-and-pda/ and http://www.helpguide.org/mental/parenting_bonding_reactive_attachment_disorder.htm.
Step Four - Referral For Diagnosis
- Fingers crossed your contact at CAMHS will see how the profile fits your child and will be open to trying different strategies.
- At this stage you may find that the time is right to inquire if your local services are aware of PDA, have experience of PDA and if they are prepared to assess children for PDA. This may be through CAMHS or you may need a referral to an ASD Diagnostic team.
- A diagnosis of ASD with a PDA profile is ideal because it not only states that your child has PDA but it also highlights that PDA is an Autism Spectrum Disorder. Mollie was assessed at the ENC and the wording that they use is ‘ name of child has an autism spectrum disorder whose profile most closely fits that of PDA’.
- If your local services accept that your child does appear to fit the profile of PDA but do not have the experience to assess or diagnose your child then you may ask that they apply for funding for a referral to the Elizabeth Newson Centre.
- Alternatively you may request that a referral be sought for an assessment in an area that does recognize PDA. The following Map is hugely helpful in identifying which areas do assess and recognize PDA https://www.zeemaps.com/map?group=688164 the green markers are indicative of areas that do recognize PDA. You can see my marker in Stoke On Trent, not recognized here in Stoke On Trent by health but it is recognized by Social Services and Education.
- Some areas may be happy to assess and offer a diagnosis of ASD only because they may believe that they are acting in your best interests by not giving you a direct diagnosis of PDA due to it not been widely recognized. Personally I would grab this with both hands but you may request that the report states that your child has ASD with a profile that closely resembles PDA and that PDA strategies would be of benefit for your child.
Step Five – Options If You Can’t Get A Referral
- If your local services do not believe in labeling or in PDA then you have only a few options left at your disposal.
- You can continue to visit CAMHS in the hope that they eventually see the light, take on board the strategies and eventually agree to diagnose or refer. Try and keep relationships amicable so that you don’t burn your bridges with after support. Begging and crying about the dire situation that you find yourself in and the desperate need that you have for the correct support for your child can sometimes soften the professional into action.
- Alternatively you can ask your GP to refer you for a private assessment which you will need to pay for yourself. When Mollie was diagnosed the cost was £2600.00 although this may have increased now. Please take steps to ensure that any private diagnosis will be recognized by your local services, if it is recognized by education and social services then that may be all you need to ensure the correct support for your child.
- You could contact your local MP with details about your case, the lack of appropriate services in your area and why you desperately need funding for an out of area assessment. I know several people who have had success with this route of action, myself included although that was regarding a different situation but it was still to do with PDA.
- You could even appeal to your local GP Commissioning group directly ( I believe that this group is now responsible for local services and funding), stating your case and the long term damage that the incorrect diagnosis and lack of support could have on your child.
- You may even have to resort to writing to Camhs and complaining that by refusing to acknowledge a condition that is now being more widely recognized and by refusing to refer your child for an out of area assessment they are failing him/her and his/her needs. This could have disastrous consequences for the future, if it hasn’t already, and that you will be making an official complaint.
- If this doesn’t provoke them into action then you could make an official complaint about your NHS services, the following link may be useful. http://www.nhs.uk/chq/Pages/1084.aspx?CategoryID=68&SubCategoryID=162
- Please think very carefully before taking any serious action about any fall out that may occur. Simply being very vocal about my dissatisfaction at the method of diagnostic tool used, the obvious inadequacies of their diagnostic service and the apparent lack of understanding of the complexities of the presentation of Asperger’s led to several services closing ranks. I didn’t shout, scream or swear I was calm and polite but very much to the point. Be prepared for potential fall out if you feel that you have no alternative other than to make an official complaint.
As I said at the start of this post acceptance, referral and diagnosis can be a long and rocky road. I hope that this post may help to guide you and navigate you through your journey. I can’t promise you success and you may hit many brick walls but I do hope that this post at least gives you a starting point and framework within which to work.