Jump to content

Your experiences of receiving an ASD diagnosis

Recommended Posts

Thanks for your input Sa Skimrande. Sorry to hear about your bad experiences with your GP. Part of the project is looking at whether there is a need to develop specialist mental health services that are specifically designed to help people with ASDs. I wondered if you (or anyone else) had any thoughts on this?


Absolutely and without a doubt is my answer to this....


I was referred to a Psychodynamic Therapist after having experienced my period of 'Postnatal Depression' after my son was born. I put this in inverted commas because I now know the fits of anger and terrible mood swings I had and that scared me half to death were probably much more to do with my inability to deal with all the changes that had happened to me and some pretty full-on sensory problems perhaps also combined with an element of depression.


The therapist was excellent and I benefitted a great deal from our sessions. The principal difficulties I have that were highlighted and discussed were how anxious I felt around other mums, in particular going into group sessions (ie toddler groups), the deep-seated belief that I have (or believed I had at the time) something fundamentally 'wrong' with me and (as he put it) the fact that I feel less 'sorted' than other women and am continuously fighting these beliefs.


If this therapist had been trained to work with people with ASD's then when these issues were highlighted then instead of challenging the beliefs necessarily, he would have been able to understand why I have them in the first place.


When I almost ended up in hospital last year, I was referred via a Psychiatrist to an outpatients OT. The Psychiatrist made it clear that the OT would only provide therapy to help me cope with my anxiety. However, the OT had worked with patients with diagnosed AS and when during our first session I made the comment that how could I know what I experienced (sensorially) was any different to anyone else she decided to do a Sensory Questionnaire with me. The Questionnaire showed that in some area I scored within the top 5% for sensitivity or difficulty. This meant for example at home, that I learned that when my son and I both became anxious and upset when my daughter cried over the baby monitor I was able to recognise that the noise was causing us both difficulties. Simple solution = switch off the baby monitor! Before this I had absolutely no idea about the reason I (and my son) was geting so agitated!


This OT had absolutely no doubt that I had problems related to ASD and was developing an 'Anxiety Questionnaire' designed for people with ASD referred to mental health services. She was even treated to me turning up to an appointment bawling my eyes out because I had been caught in traffic, got to the creche late and then found that I had left my phone at home so there was no way for me to be contacted and then got to the appointment late. However, her boss - the Psychiatrist overall in charge who called me a 'Waste of Resources' - did not want OT's to work with patients from an ASD perspective. She was moved sideways into another post when our sessions ended. During our sessions she was pretty upfront with me and said that around half of all the psychiatrists (psychologists too?) based in the hospital did not believe ASD existed and told me that there was resistance to her research.


There needs to be a complete sea-change in the attitudes of many people working within the mental health sector. People need worked WITH, not AGAINST!


Feel free to use any of my comments.



Edited by Lyndalou

Share this post

Link to post
Share on other sites

Yes there definately needs to be a mental health service specifically for children and young adults with an ASD because "anxiety" is part of being on the spectrum. Alot of behaviours are due to anxiety. Many children have co-morbid diagnosis which are due to dealing with chronic levels of anxiety.


Havent the government recently announced that there will be one assessment which will involve education/NHS/SS and that it is supposed to cover children up to the age of 25. Well that is laughable. Where is it. It has taken me 7 years to get a social worker to come and do a core assessment of my son and carry out a carers assessment on myself. He has already told me that they do not have any funding and that I should contact a solicitor. That is just a joke. Which I shall be writing to my MP about sometime in the near future. But how ridiculous. He admits we are in crisis and need respite. But cannot fund it. So what am I/we supposed to do?


My own son has a diagnosis of an Anxiety Disorder and OCD.


Then, you have CAHMS or ClinPsych telling you that the 'typical' approaches used [ie. CBT] are not suitable for those on the spectrum [which is a cop out, because they can be adapted]. Or that they 'dont' generalise things' and therefore need to be taught in the functional setting [which again gets them out of having to provide anything themselves]. Which is all well and good IF and WHEN they are involved with the school.


I am fortunate that my son goes to an independent school that has a therapy team of OTs and SALTs employed on site. They have gone to the NHS ClincPsych Department for meetings and have regular telephone conversations. The school also buys in EP input. And they are putting a programme in place for my son, which is CBT based, but adapted to his areas of interest so that he can 'earn points' for fighting the OCD compulsions, and these reward points can be used to buy things he likes. But he has had to take medication to reduce his anxiety so that he is calm enough to even attempt to use some of the strategies they are suggesting.


And that sounds great compared to what other kids/families get, which is zero.


But the other huge area is 'respite' or support within the family. When you have a child with an ASD and OCD it is VERY difficult to deal with on a daily basis and it really exhausts both the child and the rest of the family, because the family is just as trapped by OCD as the child is. I am often awake after midnight either trying to stop my son getting into the shower again, or if he has to shower I have to stay awake until he has finished his rituals and has settled down again.


But eventhough every professional may agree the family/child needs respite, no-one wants to fund it. That is where we are now, and I am going to have a fight on my hands about that. SS are telling me that I have to say I cannot cope with him anymore and threaten to abandon him or have him taken into care BEFORE they will do anything. This is huge emotional blackmail on the family. And if I am forced to do it, how will my son feel about that. He won't understand the political manoeuverings needed to try to get respite. He will just feel that I have abandoned him.


I went to my GP last week asking for support and he's prescribed me pills for anxiety and stress. He also gave me a leaflet for the Psychology referal service. I've spoken to them and said that I really dont think I need to see someone for them to tell me that I have too much to cope with. Because I already know that. I need someone to do something about it and lighten the load.


It is so unfair and wrong that the only solution so far offered to me, so that I can carry on caring for my son, is to take tablets to take off the 'edge'. No-one would cope with what I have to deal with every day, 365 days a year, for 11+ years with no break.

Share this post

Link to post
Share on other sites

Totally agree there is a serious lack of MH services that can help those on the spectrum. i hate being autistic when it is used as an excuse for authorities to 'take responsibility' for my needs. My GP doesnt see the point in diagnosing me with CPTSD because that could refuse services. i suggest she sets a presidence by identifying and diagnosing CPTSD/PTSD cases hard to tell which one will work.


Even when you have a care agency that doesnt help you get additional services. i cannot have a permanent care co ordinator despite the other 2 clients in the same care agency and county having 1. i have been waiting since last November for someone to put me and my family back together again and have been trying to find a way to sort myself out as well, All additional needs that SS have heard about still wont get me a permanent care co ordinator. i am heading for a breakdown and no local authority cares.


Please use my comments (annonymously) for your ASD research. i know of many other ©PTSD survivors who are also on the spectrum that need your help.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Create New...