Both my children 10 and 3 are autistic (diagnosed) I believe I am also and I don’t know what to do.

Hello,

Thank you for your message. I have written out a response several times deleted and re written over and over again. Something that I tend to do all the time  

I go to extreme length sometimes to avoid some things that involve me communicating  like replying to a message/email/text as I don’t feel confident with what I have written as the reply. Which leads to me feeling rude for not replying and stupid for not being able to write what I want to say and then I just avoid the situation. 

I usually wouldn’t tell that to people but as you have said above I need to help people help me.

I’m stressing about my appointment with my Cpn in a few weeks time as I know she will want to discuss my doctors appointment on Tuesday regarding diagnosis referral. 

I worry that she will say you have depression and anxiety, trauma from childhood being in care, trauma from a neglectful mother and father and on top of that you are Raising two children who are autistic with no family around you. I really struggle to challenge her views and I tend to agree just for the fear of being told I am wrong and you are depressed etc etc. She even sent me tips on how to rationalise my thinking with BPD disorder typed on the top of the letter. I immediately burst out in tears worrying I was being labelled as having BPD. After a few days of panic I had to call to question this and she said to ignore the BDP headline she just wanted me to go through the strategies she had sent before doing something that I struggle with such going out and buying groceries. She also said she did not think I had BPD. Why would a health care professional send that to a patient with mental health difficulties.

I can confidently say I am a great parent to my children (Now) as I do alot of gentle parenting (works so well with my youngest) Although in the early years with my eldest son I was out of my depth and didn’t understand him at all even when he was diagnosed with ASD PDA I was clueless on how to parent him as everything professionals told me to do over the years never worked (looking back now it was all the wrong advice for a child with PDA) he was labelled this awful wee boy and his environment in school was so challenging for him and at home He would just explode and I felt like the worse parent in the world. Looking back even now I have so much guilt. Thankfully Camhs picked up on the behaviours and referred for diagnosis.

We moved to a better school and to a local authority who had lots to support children with disabilities the change in schools helped my eldest he has a full time pupil support assistant PSA. 

I am lucky that my local NAS branch does lots of training online via zoom that I attend. They have different speakers on doing presentations each time. I watch Harry Thomson and Laura Kerbeys videos on PDA. That has have given me a wealth of knowledge in how better to support both my children at home and about also about their education rights. My youngest has a developmental therapist from Scottish autism who has supported and taught me so much. We are really lucky with the support we have in place now as I know a lot of others don’t have and it’s really done to what local authority you reside in. 

I have went off topic and went on a bit about my children as I tend to do when I want to take myself out of the subject.

With the right support for autistic people and the right education for parents then we can support each other in a healthy balanced way.

I just wish signs were recognised when I was younger and I could maybe have had a better supported childhood and been able to cope with education better. X

I’ve seen this post and am curious if I can’t help? 

Many seem to express the same anxiety over this ritual-like scenario of getting a professional dx. But it’s the same for any sort of issue on a molecular level. The tests are different depending on the issue and there still exist diseases to uncover, as not only is the brain as difficult to explore as the oceans but everyone is so different. 

Even though there is a wealth of publication on social black holes and pitfalls of ideals, musicians protesting subliminal messages, positive gurus with warnings and philosophers rendering book after book on what society would need to “fix” itself, it is all still quite invisible  even when a concept like “imposter syndrome” becomes mainstream it is warped into some masquerade of nonsense for NTs who wish to exert power through piety  

There is a real fight in life to not be at complete mercy of some kind of fate and marginalised individuals can really feel this.

But help them help you!  If something is creating problems don't allow anyone to just sweep it under a rug. 

if anything, perhaps in your situation, you will find it easy to mother your autistic children and possibly help or assist parents who are NT. from what I’ve seen online, that is a very overlooked aspect which has yet to be addressed. 

just some thoughts. Sounds daunting!! Hope this helps. It does seem you’re view and processing and going through this is possibly helpful to many individuals here. X

I had the phone call, it went okay I think. My voice was trembling which I don’t know if she could hear that through the phone. I went over a small amount of my notes and she listened for a short period and then said do you think this affects your life a great deal I said yes. She said it’s usually children she writes referrals for and she had to go and research what the process is for an adult. I said it would be neurodevelopmental psychologist referral and she requested I have a face to face appointment with her on Tuesday morning and to bring my notes and the self test I’ve done and bring the results with me. She also said as I see a CPN I could possibly ask her to write the referral as she believes this may result in me being seen faster. She said she will let me know everything on Tuesday. I don’t know if I feel better or worse that I’ve opened up and now I have to go through tests to prove who I am and if they say I am not autistic then  I am unsure how I will feel. 

thank you for reading. 

Hi,

My appointment is at 9:30am. Unfortunately I don’t have any one to support me this morning during the call. I will update afterwards. Thank you x 

Hi,

Can you update the post to let us know how you got on? I'm really interested to know if it was helpful at all to you to speak to them?

Good luck x

Honestly that's great to hear. I don't want to sound bitter but i suggest you bring someone to the appointment with you or record the appointment as doctors can be very dismissive and dishonest about possible options. 

Know if he says theirs nothing in your area for adults diagnosis of ADHD that is a lie and remember you have the option to go through the NHS right to choose scheme to be seen quicker then the NHS waiting list. 

I highly recommend psychiatry UK if you decide going through the right to choose however go through this option only entitles you to either therapy or medication not both.

Hello Blue, 

I know this thread is from a long time ago but I have my doctors appointment tomorrow to voice my reasons to be referred for diagnosis. My doctors surgery has new doctors and only one of the original doctors still work there so I have never spoken to the new doctor before. Our surgery is still not allowing face to face appointments, my appointment will take place over the telephone. I am anxious that I come across wrong. I have been writing notes all evening but now I fear I may have written to many notes. Wish me luck and that the doctor does not fob me off. 

Hi Blue, 

You are correct that some of the links posted are no longer active - our apologies for that, these have now been corrected. This was a mistake as a result of the website changing. 

Much of what you'd mentioned is not something that the moderation team can help with, please email us at CommunityManager@nas.org.uk and we can make sure that your concerns are passed to the correct team.

Many thanks,

Dani Mod

Attention Deficit disorder is know known under the diagnosis of Attention Deficit hyperactivity disorder similar to how asperges & Pathological demand avoidance is now under the diagnosis of autism spectrum disorder. 

Attention Deficit Hyperactivity Disorder has three major profiles which are inattentive and distractible profile, impulsive/hyperactive profile and the combined profile consisting of both profiles.

Some individuals with the combined profile can have periods of extremes symptoms going from specific profile like an pendulum going from impulsive/hyperactive profile one day or week to inattentive and distractible profile and even periods of both which makes Attention Deficit Hyperactivity Disorder difficult to manage.

Attention Deficit Hyperactivity Disorder can manifest on it own or comorbid with autism and other neurodevelopmental disorders and can easily be confused with Mental Health Disorders and even Bipolar Disorder. Attention Deficit Hyperactivity Disorder can show similar physical manifestation and behaviour to autism.

Sensory processing disorder is commonly comorbid with both autism and Attention Deficit Hyperactivity Disorder. what you said about headphones and noise is quite common with people with sensory processing disorder and like autism and Attention Deficit Hyperactivity Disorder it can manifest in many way an example of this would be Synesthesia. Verbal communication can become a challenge with Sensory processing disorder when individuals are overloaded by sensory input around them and Some individual with sensory processing disorder become selectively mute, some have issue sequences words and pronouncing words properly to from sentences. you have said that you worried about how you are going to be able to verbal communicate your suspicious to the doctor. don't worry the entire community page understand you.   

Attention Deficit Hyperactivity Disorder because some of the thing you wrote about memory quite common with the inattentive and distractible profile. also many individuals with Attention Deficit Hyperactivity Disorder have rejection related dysphoria which can manifest in you questioning previous conversations and make anxiety worse.  

I was nervous to but not knowing was driving me mad

Hello Simon, 

Thank you for your response, I feel that is what I need to do but I am very anxious about taking the first step in doing so. I believe also that  there is a link with our genetics.

Hello Blue,

Thank you for your reply and apologies I have taken a while to respond. Some of the things you have written make a lot of sense and are relevant My eldest child's father was diagnosed with ADHD in his early 30's he also has two cousins on his mothers side who are severely autistic and non verbal .Which may explain a Link between my son and his fathers side but My current partner who is the father to my youngest Child, have no history of mental illnesses or any of the disabilities you have mentioned above. Which makes me believe that there is also a link with myself although there its a lot of young children in my current partners family who we only see for a short time at Christmas.

My youngest had a variety of blood tests taken one of which was for fragile x syndrome all came back negative.

Can I ask why you suggested diagnosis for ADD and Sensory processing disorder? I have tried to find some information online about ADD but all that I could find was linked with hyper activity. I also felt a lot of the information I read was focused around children with sensory processing disorder. 

I believe the best way to take this forward with the doctor is to write a list  as you suggested and try my hardest to explain why I feel I should be referred for Autism assessment and not jumble up my words and not make sense which I tend to do. I just worry that as I have always put the way I am down to severe anxiety and depression that they may not take me seriously. I just need to find the courage to make the appointment.

Hi chloe,

But it seems that most of the National Autism Society website is under construction and incomplete with most links you are posting come up as "error" or "page not found". 

Some of the information on the website doesn't seem to be remotely helpful whats so ever and very vague at best. the online Directory need a complete overhaul because most of the organisation listed in the directory for my area alone have changed what they do as service, Some of them no longer exist, Some of them do not support all age groups anymore. 

It also need to be said that employment programme that the national autism society and bloomfield trust set up to breach the gaps of autism unemployment is not accessible to the majority of the united kingdom outside of the major cities such as London, Glasgow, Manchester, Edinburgh, Dublin and Bournemouth and Newport. It is the  same with any job Postings on your website too. I am speaking for myself and multiple people on the spectrum who uses the community page and National Autism Society Website are getting extremely frustrated that the moderators keeps suggesting with website links that are non existent or links to the employment section of the website that seem to excluding area such as Norfolk & Suffolk. 

I am sorry to be this way but it is frustrating when the information on the website is very vague and used by many organisations and medical professionals as a central hub for everything autism related which is leading to some organisations and professions to interpret what the information on the website in a negative manor or used to dismiss individuals support needs. I would really like a non copied and pasted reply from the moderators to discuss these issues.

Please Anyone else in the Autism community who feels the same, please comment by replying to this comment to support the issues i have brought up because it feels like i am going in circles. 

Hello I think you should get a diagnosis autism is very genetic so very likely you’re on the spectrum.

Hi Lau,

Thank you for sharing this with the community. You may like to look at our information about autism spectrum disorders:
https://www.autism.org.uk/advice-and-guidance/what-is-autism

If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section:http://www.autism.org.uk/directory.aspx

You may like to have a look at the following page which includes personal accounts, which may help:https://www.autism.org.uk/advice-and-guidance/stories

If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

Best wishes,

ChloeMod.

I am not a medical profession but here is some facts that i have learned through reading actual books trying understand why i am so different from others. Yes i am autistic adult myself. 

Autism and other neurodevelopmental disorder are believed to be genetic so it is possible that you or your partners or both could have autism too. It is also possible for you, your partner or both have a different neurodevelopmental disorder for example Attention deficit disorder, bipolar and other condition like epilepsy could increase the chances of procreating a child with autism as some research and studies have shown but there's still more evidence and research need to be done to confirm it one hundred percent.

Pregnancy and conception is believed to affect but not been confirmed for ethical reasons the likelihood of children being born with autism. mothers with undiagnosed reproductive diseases or underlying autoimmune diseases that can go unnoticed for years has been theorised to be a cause autism. Also it has also been theorized that families with history of Fragile X syndrome,  Edwards' syndrome,Prader-Willi Syndrome & Rett Syndrome have an increased chance of having children with autism.

It has been Recorded but not yet disproven Some combined prenatal test have come back positive or have indicated increased chance of child being born with a syndrome such as Edwards syndrome and in some rare cases despite the test proven to be positive for the child to have been born without edwards syndrome and recently there has been connection that has discover that those child born without edwards syndrome but their prenatal test results coming up positive for those children to be diagnosed later in life for autism and Attention deficit Disorder.        

You can have Autism and have both depression & anxiety. Yes it is true that some of the autistic traits can appear to look like other conditions such as bipolar, Depression and Anxiety but they can be a secondary symptoms or comorbid conditions with a neurodevelopmental disorder.

Sensory Processing Disorder is commonly comorbid with autism and Attention Deficit DIsorder but it is a separate neurodevelopmental disorder altogether it is possible for you to have sensory processing disorder,

It is quite possible that you have Attention Deficit Disorder which can appear to overlap with autism and even occur comorbidly with autism. But fundamentally autism is mainly characterised but social impairments such as struggling to understand how others fundamentally chose the way to communicate and understanding social cues and lack or misunderstanding of the neurotypical theory of mind and can manifest itself in a range of ways such as individuals not recognising facial expressions.

Personally i recommended you seek a diagnosis for autism but you should also seek a diagnosis for sensory processing disorder and possible attention Deficit Disorder. Depending on you local diagnostic services you may have to have separate assessments for each disorder or if your extremely luck a neurodevelopmental psychologist that diagnosis you with all three. Your Doctor may say "lets deal with one condition at a time" but you want to be on the waiting list for all three i have suggested because the waiting list can be anywhere from 1 year to 6 years in some areas of the UK. 

My advice on initiating a diagnosis with a doctors is that you should discuss your theory to them, write a list of supporting evidence on why you believe you might have autism. Some doctors are outdated and un informed still about autism and Attention Deficit Disorder and will try and dismiss you or question why you want a diagnosis and the fact is it will help you understand yourself better, it will help as supporting evidence for any benefit claim or financial aid in the future, Protect you from discrimination in the workplace and help enforce reasonable adjustment in the work and most of all it should give you relief.