Moving Home...
Moving home can be stressful as it is, but add children to the mix, and it can become virtually unbearable. It can affect the entire family. Children can often feel affected by the whole process also. When thinking of the autistic child or young person and moving home, some areas are essential to consider.
Let's look at a few ideas to make the whole thing smoother for everyone.
Talk/ show them the entire process.
To just say that you are all moving home will be hard for many children, including autistic children, to understand. Showing an autistic child precisely what to expect, and each step is vital to their understanding of what to expect when moving day comes around. Preparing them will go a long way to alleviating any anxiety they may have about leaving their old home and venturing into a new and strange property. Use photos and especially walk-through videos of the property to create a "moving home book" including their new bedroom that can be looked at and talked about many times before the move. Be sure to include any photos and videos of the street and areas around the new home also.
Take them to see the new home.
A great way to prepare children for is happening is to ask if it is possible to bring them along to a second viewing, bearing in mind Covid related restrictions. Taking them for a walk around the new area of the home can also help prepare them. Getting them comfortable is imperative. By introducing them to the neighbourhood and the new home, you will be helping them get used to the idea of moving home and the new home before it happens. Showing your autistic child their new room in their new home, if possible to do, can help embed the idea of a new home for some autistic children. Be sure to ask the agency for videos and photos if they aren't many available on their website.
Help them voice their concerns.
Listen to their concerns too. If they struggle to communicate verbally, using dolls and play may assist in conveying the idea of living in a new home as well as possibly see any anxieties about moving. Always try to answer their questions honestly and thoroughly. Autistic children think and perceive the world differently, and they may even open your eyes to things you may not have thought of yourself. Helping them voice concerns can help to relieve anxieties that they feel.
Prepare, Prepare, Prepare.
Preparing to move is a chore. Let's be honest about it. Selecting an appropriate time to move also isn't always easy, but the more preparation you do, the better it will be for your autistic child. Some parents think moving in the middle of the summer holidays is better. Others find it easier for their children if they move during term time, as this helps occupy their mind and gives you extra time to prepare and pack. If you feel your child will be overwhelmed when you start to pack up items, regardless of preparing them, then consider a pictures/ videos explaining exactly why when we move we must pack up and take our things with us. It could also be that even doing that may not make a difference, and the idea of moving things is causing them anxiety. Then definitely consider packing when they aren't there in the room or home.
You know what is best for your autistic child, so as much as possible, organise the move in a way to remove their anxiety best. If you feel the move itself could be overwhelming, maybe that means after preparing them for the move, what the new area and home will look like, that they aren't there for the actual full move itself. It may be best that they are there for only the final section, moving the items into the new home.
If you are moving to an entirely new area, there will be many things you and your child can explore together, so make a list. This may come in handy when exploring the new area together before the move itself.
Transition
The time just before the actual move can be an incredibly anxious time for your autistic child or young person. Despite all of the preparation, most people feel anxiety and anticipation when moving home so, for our autistic children, this may be heightened anxiety. You may notice the anxiety manifesting in sleep disturbance, less flexibility and other difficulties. These difficulties are why preparation is so crucial. Those photos, videos or photo book can be reassuring to your autistic child to have.
Keeping the time before the move as calm as possible can really help reduce the anxiety your autistic child may be feeling as the day to move approaches. Having already packed up the non-vital items, if possible, time can be spent together instead of rushing to have everything ready.
Involve them/ Turn it into a game.
Another great way to make the whole process more tangible for your autistic child is to get them involved with the process. This could be as simple as letting them help you pack some small items, possibly even some of their own. Do not make the mistake of packing any favoured items as you may have to unpack them before the move. Often many parents leave most of their children's items until last to pack with the final essential items.
A good tip, if it works with your autistic child, is to turn the day into a bit of a game. Doing this may help get them interested in what is happening. The game can be packing for the move and or the moving day itself. Moving home is a massive step, and many of us can get caught up in the stress of it all. Being prepared relieves some of this and allows you to let go of some stress and focus on your child.
Be Organised
Labelling, it is a skill that is very good to have. When dealing with your autistic child's thing, simply putting labels such as 'clothing' on boxes will do for your personal effects. But it may not necessarily be enough for your child's items. Be specific. It is without a doubt that your child will ask you for something or need something and you want to know exactly where that thing is. It can make the difference between your autistic child being overloaded or calm.
Packing everything correctly is essential if you want to minimise any damage or losses during your move. However, is there any items your autistic child simply cannot do without? Most likely there is, so keep these unpacked, provided they aren't large items, especially if they are a stim toy/favourite item.
Settle them in
Once you are all moved into your new home with your autistic child, it's crucial to settle them as quickly as possible. Getting their familiar items out of the boxes quickly will help stabilise them and make them feel at home. Sticking to established routines from the old home is vital as well. These routines, well established, help reduce anxiety in autistic children and sticking to them in the new home helps them establish predictability.
Just a few ideas to keep in mind, as well as preparation, can make moving home with your child far less stressful and maybe even a little fun.
Lastly, enjoy your new home. :)
College: Part One
College…. Choosing a course, choosing a college, living at home or in a dorm, shared flat? What about the support?? These questions can excite a family or start anxiety in others or even a bit of both. For our autistic youngest, now 19 having spent their gap year in a pandemic, it was definitely a bit of both. We are an autistic family, albeit not all formally diagnosed. We have experience in just how “unfriendly” many educational settings are for autistic people. It is what drove me to get a degree in autism while in my 40’s. It is what drove me to continue to work in the field of autism consultancy and training for over 16 years, to this day.
We, including my 19-year-old, the thought of attending college was both exciting and induced anxiety. My 19-year-old was having the worst experience as they deal with intense anxiety. This triggered their exposure anxiety as well ( “the excruciating sense of audience to one’s own existence”- Donna Williams). It started with online enrollment.
The application was easy enough as my 19-year-old knew the course they wanted to take. Fill out the application online, done. The acceptance letter came with the next steps. It gave an online username and password. Okay, this was going well. Then the page opened with 6 steps. There were the usual, proof of address, certificates from HS, ID with the date of birth and photo. Oh no. Is their passport up to date? They have no other picture ID. This alone causes extreme anxiety as my 19-year-old really really dislikes having their photo taken, and they are already at high anxiety…
Phew, the passport is sufficient, the anxiety decreases, and my 19-year-old continues on with the online enrollment. The next section is two tests. One is an English test, and one is a math test. The anxiety goes up again though I am deeply impressed to see my 19-year-old just go on and complete the tests. I certainly cannot say if my eldest was helping at all while in the room, but there were a few giggles. So the online enrolment is sent off completed. Again we are all thinking that the process has been easy.
See, we were unable to transition our autistic 19-year old into college as we had planned, obviously. Understanding them as well as what “strategies” work best, we know from experience that many visits to the educational setting are needed as well as clear communication of the rules and expectations. My 19 year old needs to know where they can go to “escape” all the blah blah, the barrage of social and sensory input. In the middle of a pandemic with social distancing and all the other measures put in place, this was going to be more detail than usual. But everything suddenly happened fast, and suddenly my 19 -year-old was facing a telephone interview and a two=day induction in a matter of days.
There was no time. There was no time to gather the necessary information from the college, who were at this point very accomodating. Suddenly, we are dropping our 19-year-old at college for their first day of induction. As I see them walk into the entrance, using hand sanitiser as they go and pulling up their mask, I have a thousand thoughts. Are they going to be okay? Should I have told them all of the rest of the things that might happen in an induction instead of only a few I knew would happen, thinking it could create more anxiety and a refussal to go? What if they freeze? What if someone is ignorant or even cruel to them? Will there be the learning support assistant they said would be there in class waiting? I never worry about my 19-year-old and their “behaviour”. I worry about how others will react and treat them. We have had years previously of how cruel, ignorant and neglectful those who should be the opposite, actually can be.
Back home, as my partner and I are working from home. Neither of us can work without always looking at our phones. We are hoping to not see any messages from our 19-year-old or the college. Hours go by, and we remark to each other how the 19-year-old’s day must be going “okay”. At about 1pm a text comes into my phone from the 19-year-old. they texted two words only at first…
“I walked.”
Then the second text came. “I couldn’t handle it”. I didn’t ask any questions in my reply text. It said. “okay, we are on our way”. We hop in the car both agreeing that we were already satisfied with the length of time our 19-year-old managed. As we approach the entrance to the college, we see them. Head down, inconspicuous, they only look up when they recognise the car. I can see the anxiety drain away as they get into the car.
Much later that day, we found out how that induction day went. As my 19-year-old spoke, my heart swelled, but there was anger as well. Anger with myself because I should have pushed the college for details on the Induction days. Anger at what I personally consider vacuous tasks educational setting employ that is guaranteed to set off anxiety in many students but especially autistic ones. Tasks I also struggled with many years ago.
We found out that shortly after entering the college, they were all ushered into separate smaller groups based on the courses being taken. They sat and listened to someone talk about the college, areas in the college, covid restrictions as well as the rest of the usual administrative induction information. None of the real details sunk in and I doubted they stuck with many other students either. They were not given any student handbook or any written information.
The students in my 19-year-old’s group were ushed into another room and sat in front of a computer. This is when my 19-year-old found out that they were all going to be “assessed” again. They told me their anxiety was already almost at peak at this point, but they started the assessment. Two “tests”, one is an English one in math. People often assume, who don’t fully understand autism, that my 19-year-old is “great” at math because they are autistic. Believe me when I say that my 19 year old’s math skills are far superior to mine. I realised at 51 that I was autistic ( but that is for another time) and only a few years earlier that I have dyscalculia. So that also blows the autistic people are great at math crap.
I also need to point out here for those who do not know, many autistic people, my 19-year-old and myself to a degree included, process information differently and it can appear to take a bit longer than those not autistic. Understanding the written language can be challenging at times for my 19-year-old who often just needs someone to “translate” it for them. Giving them the information in a simple way, highlighting what the task is and the purpose or goal is all that is needed.
An adult was supporting all of the students. This person noticed my 19-year-old’s hesitation and although, not knowing my 19-year-old was triggered by saying “come on, you need to start”. They also misinterpreted the meaning behind my 19-year-old stating ” I can’t do this” which actually means, I don’t know how to start this. The supporting adult then replied ” well if you can’t do this, maybe you shouldn’t be here. maybe it is too much for you.” I could feel the anger growing as I was told this. Then my 19-year-old proved once again just how much of an insightful, thoughtful and considerate person they are. They continued ” But he didn’t know me and was a volunteer and a bit ignorant, so I couldn’t be mad at him. Plus he then helped me after looking at the question and saying Oh this is harder than I thought”. Ha! and some still try and say that autistic people can’t “put themselves in another’s shoes” and don’t understand that others have different thoughts, feelings, etc. to them.
My 19-year-old finished both “assessment” tests. This is an outstanding personal achievement as they struggled all of their school years with tests with the anxiety growing to the point where they would refuse to do the test regardless of the ability to not only complete it but score highly in them. It was the need to be perfect, to not get an answer wrong. My 19 year old would tell you this themselves if they knew you well enough. They would regret not attempting all tests they refused afterwards. So we were proud for them hearing they not only attempted but completed the assessment tests.
Then my 19-year-old told me that they were put into smaller groups, and my heart sank. I had a feeling I knew what was coming—the dreaded group task. Throw random people together and give them a pointless task that allows for the “assessors” to see into their personality, how well they manage as well as how well they work with each other and in a group. I knew that my 19-year-old’s anxiety must have virtually reached a peak again at this point. Again, I was so proud for them as they explained that although it was “stressful” they contributed and completed the group task.
It is what my 19-year-old told me next that took everything I had to keep control of my rollercoaster emotions. I literally feel the same emotions as my 19-year=old felt or is feeling. I have with both of my children since they were born. They had waited until all the other students had left and it was only a teacher he had been with all day and another person. That is when my fantastic 19-year-old overloaded. This didn’t take the form of previous ones in an educational setting such as hitting and kicking out, swearing, or walking out but rather my 19-year=old burst into tears.
My heart broke a little more. I knew the place they were in at that moment, exactly. For my 19-year-old with EA (exposure anxiety) to cry in front of people, they do not know meant that they had passed peak anxiety ultimately and had moved on to another different reaction/response. Releasing that anxiety in that way showed us and my 19-year-old that letting it out amongst people that care isn’t catastrophic as they had believed for so long. My 19-year-old was able to express that they had reached their limit and had to go. Again being able to communicate a need for someone with EA, when they feel like they are “on display” all the time, and that need highlights a personal aspect of them was a big step.
Thankfully, the teacher understood giving my 19-year-old the permission they sought to leave the induction day. My 19 year old explained to me that it was the culmination of the whole morning and then the thought of going into a busy lunch area and not knowing exactly where else on the college premises they could go; that was it. That was the proverbial straw. They could not stay. I think my 19-year-old was shocked a bit when we told them that we weren’t angry or disappointed but proud and impressed for them that they lasted in the induction as long as they had. We said that we thought our 19-year-old put enough pressure on themselves and we were not going to add to that. Plus, we added we had nothing to be angry or disappointed about, and we honestly didn’t.
That evening the anxiety my 19-year-old felt only abated briefly and then started to rise again. The second day of induction was “looming” for them. It quickly became apparent that my 19-year-old could not handle going into the second Induction day.
Negotiations with the college started that second induction day…. stay tuned for part 2…
The Gap Year
I had planned to write a blog at the end of my autistic youngest' gap year (see here: A Gap Year…..). one that was full of photos of adventures they had, all the achievements, all the discoveries, the difficulties overcome, the fun....
We had planned on visiting various museums, exhibitions and Expos. We planned on visiting friends and maybe even different cities in the UK. We had plans...
The King Tutankhamen exhibition was incredible...
Then the pandemic hit...
Well, that changed things completely. suddenly we are in a very strange new world. A world were terms like lockdown, PPE, "wash your hands", "keep your distance" and face masks are the new normal. I have to admit, things have been scary. But in our home, adapting to online living has come quite easy.
We are privileged, we have good internet and a screen for all four of us. So we were used to online shopping and certainly communicating with friends and family online. My kids (I say this as one is 19 and the other is 21 years old) are gamers. They built and rebuilt their own PCs and have been online since they were young, albeit with parental oversight and scheduled time away from the computers until they became adults.
While I hear my friends and people online talk about the changes and how they are struggling working, studying, living from home; I look at my own family and realise that actually in this moment, we are lucky. I know many are struggling badly. I know juggling children, home and work is hard as it is without these restrictions due to the pandemic that is literally killing millions world wide. I understand the anxiety you feel about the future, about your career, education of your children, paying the bills, health of your parents, etc.. I understand because that was my life pre pandemic. That is the life of any and all SEND Parents/Autistic Parents/Neurodivergent parents of SEND/ Autistic/Neurodivergent children.
I don't say that for pity. it is reality and as I've said, I consider myself lucky right now. I say that to highlight the other side of a family that you probably have living in your street. I am lucky. I cannot stress that enough. But there are other families, families without the best internet. families without a screen (computer) for every person living there. Families where getting out of the home was a relief from the abuse, harassment, neglect. Families that have fallen through the net of financial support, not knowing where the next meal is coming from. I know this. So I am Lucky.
My 21 year old easily moved from working in the city to working from home. Being into tech anyway, he already had most of the equipment needed. He is in front of that computer when not working anyway, gaming and chatting to friends, so it was no big switch to working from home. He was most definitely happy when his company told them they were most likely going to keep some working from home. My partner works for himself, and most of his work if not admin is appointments. Again, working from home came easy. A bit of skilling up in video calls and utilising videos into his work was all it took.
My youngest, the 19 year old who recently had a Gap Year.... Just a reminder, the gap year was to take a much needed break from formal education and skill up on personal goals. The goals included confronting exposure anxiety ("The excruciating sense of audience to one's own existence": Donna Williams) by going out more locally as well as exploring other interests including visits to museums, exhibitions, expos, etc. This was to prepare before embarking on a college course. We found the right college with the right course in media. We visited once without our youngest and once with. Then the pandemic and lockdown happened. Obviously when lockdown was lifted educational establishments were coping with the repercussions of the lock down. So, we never had a chance of transitioning our youngest into college as we would have normally.
Time went on, the decision made, our youngest enrolled online for the course in August. So, I really wish I had all those photos of all those memories that were intended for this blog post but we live in unprecedented times....
Stay tuned for the next blog post called "College" :)
Our story
Our story is long, as many families with SEND are. So, I will try to keep it as simple as I can.
Our child was diagnosed autistic at around 4 years old after 2 long wasted years with CAMHS were they tried to convince my partner and I that our youngest child’s difference was our “fault” because my partner and I were adopted. Never mind our older child, who seemed to be the “perfect” child according to those same professionals. Two years of wasted time when only after we finally refused to return to CAMHS unless our youngest had an autism assessment, they agreed and referred us. Thirty minutes into a two-hour multi-disciplinary Professional assessment appointment, they diagnosed Autism Spectrum.
Infant school was a bit of a blur. We had organised the diagnosis and Statement of SEN, though it took a year before the Statement of SEN completed to meet actual needs. Luckily our youngest went to a school with, now we realise, one of the best SENCo’s ever, while my partner and I did everything possible to learn as much as we could about autism. I then started working at the same school supporting specifically other autistic children. Because I felt I could not return to my previous lucrative career as a professional makeup artist.
I stopped working as a professional makeup artist when my youngest was born, as I knew instinctively from day one that they needed more support than their older sibling had. I didn’t work for almost 7 years before starting at my child’s school. My partner ended up going self-employed, making his own hours because as I am also disabled with hEDS and I needed more support. Financially times were tough, and I went into personal debt that ended up taking over 5 years to clear. We suddenly had half the income coming into the home then previously. However, looking back, we are truly grateful our child has this good start in their Infant school because the next 3 years were hellish for them.
Year 3, and though the Junior school was on the same grounds as the Infant school, they had completely separate senior staff and did not communicate well with the Infant school. The Junior school then put our child through 3 years of bullying not only by the other students but by the staff, including senior staff.
Our child was not on any medication besides melatonin for serious sleep issues until the middle of year 3.
Because I was still working at the Infant school, the senior staff of the Junior school thought nothing of calling my head teacher to tell her I had to collect my child and take them home because they were “out of control”. This happened at one point daily until my head teacher, who knew my child well, took control and told them to stop calling me and to just send my child to her office. Suddenly this “out of control” child was happily doing errands for her or completing any work she gave them. I took medication myself temporarily to deal with the intense pressure I was under from the Junior School.
I decided I had read all the books on autism that I could get my hands on. I took every course, workshop or conference on autism, and finally completed my post grad degree in autism. I knew I had to know more for the sake of my child. I continue to pursue educating myself in autism and especially the concept of Neurodiversity.
Two years into the Secondary ARP, because it took some time, with talking therapy at the ARP and a diagnosis of PTSD, we found out exactly just what was happening in that Junior school. I knew the SENCo was archaic, and she didn’t believe in my child’s diagnosis as she said directly to
me. I also knew, regardless of getting an Autism Advisory Teacher in to speak with this SENCo, explaining Good Autism Practice to her and the rest of the staff, that she didn’t really follow it or the Statement of SEN. The teaching assistants assigned to my child, from day one of the Junior school, had less knowledge of autism than I had, as I had only applied for my autism degree when my child was year 5. One admitted that she had one day introduction to autism course. She continued to borrow books from me and ask me strategies for the entire time our child was in the Junior School. Not one of the TAs had any previous experience of working with an autistic student.
But we did not understand the depth of the continual abuse. I won’t go into everything, but if I had known at the time that at least one of these abusive incidents occurred I would have gone to the police, the governors of the school and Ofsted. Here is just one example, to “calm” my child down when they had a sensory processing difference overload, the SENCo would lock them in a room the size of a broom cupboard with the lights off and no window. My child says it felt like hours.
Our child’s anxiety didn’t manifest into agoraphobia until year 3. Suddenly my child is being put on Equasym to deal with his “hyperactivity” and Risperidone for the intense anxiety. They were showing signs of OCD, not sleeping, and needed to know where in the house every family member was. They refused to leave the house completely. The Junior school did not understand, and we had to reach out to a local charity and return to one of the diagnostic professionals for talking therapy and eventually, the medication I've already mentioned. Because of the effects of the medication, our autistic child ballooned in weight and was further bullied because of it. Because of the effects of the medication and extreme anxiety, they would not eat lunch at school. They ended up by themselves in a room, waiting for the first child to go out to the playground so they knew they could leave the room. So, you can imagine the hunger by the time they returned home. It was at home they would finally eat.
Because of the day exclusions and internal exclusions, they sent home any work given to complete. I then became virtually a teacher and teaching assistant to my child. By year four, they also sent any work not completed during the day home to be completed. Because the TAs were uneducated and inexperienced in working with an autistic student, and having little to no support from the SENCo, they did not know how to work with my child. They were told that our autistic child was being “naughty” or “stubborn” when they were struggling with sensory processing differences or executive functioning problems. A sensory overload to them was a childish tantrum with no merit.
So home and school blurred briefly, and the stress felt by the entire household was extreme. Home was a haven previously, and suddenly there was no relief. I decided enough was enough and refused to do the work sent home that my child could not accomplish by themselves. It never was very much as there was no context for it. It hadn’t been taught efficiently enough in school. I refused to be my child’s schoolteacher, because simply put, I was not their school teacher. That decision was hard. I had to accept the repercussions. But for the sake of my child’s mental health, and the rest of the family, I had to make it. Home had to be that haven, that safe place we had developed from when the children were born. Funnily enough, the school was most interested in our child when the SATs came around as they knew his scores in mathematics, science and IT would benefit the school regardless of their incompetence.
The playground was a minefield. The Lunchtime Supervisors, and assigned TAs also had little to no real understanding of autism, though there were a couple who truly tried and were compassionate. Most of them did not understand our autistic child and branded him “silly” and “unruly” or even “a troublemaker”. Our eldest was in the same Junior school as our youngest
for two years and was continually called on to “help”. Our eldest for those two years defended his sibling constantly and truly tried his best. But there were also repercussions for him, and he virtually became a support assistant for those two years regardless of our express wishes that staff did not use him this way.
Some students were especially cruel and would aggravate our child to the point of an explosive reaction and then run to an LS or TA, getting my child reprimanded or worse excluded. In one instance our child reacted by pulling off and slightly ripping a child’s hat. It was a wrong
reaction, but it was thoroughly provoked. The SENCo then decided how to deal with it and purposely decided not to inform us of her decision. She also told the rest of the staff not to tell us either. She decided that my child, in year 4, should meet with the parents of the child of the ripped hat, with only their inexperienced TA accompanying them.
Our autistic child then had to sit and listen to two adults, who did not know the child they spoke to was autistic. They asked an autistic child, with social, emotional communication differences, to “explain” why they ripped the hat. These parents then decided my autistic child’s punishment. The punishment was not being allowed in the playground for two weeks. The day this meeting took place our child came home a complete mess, and we didn’t understand why as he couldn’t explain it. All we knew was that the playground was off limits for them for a long time. You can image my horror when I asked the TA the day after and finally learnt what had happened. Again, had I known then what I know now, I would have complained.
We didn’t learn further details of what took place during that meeting until after our child attended their Secondary ARP when we learnt that these two adult parents berated our autistic child and said they lied when told about the actions of their child that led to the hat being ripped.
I could tell other examples of the daily bullying my child endured. The invites to play, only to be later mocked. The days of taunts and name calling. The adults who berated my child instead of trying to understand and listen. The birthday invites ignored only to be used to mock later. All of this under the eyes of every adult in that school. All the while our child’s self-esteem and self-belief were plummeting. Often some kinder staff would tell me our child’s struggles but felt powerless to intervene or change the situation as they felt inexperienced and uneducated in autism.
The many meetings, conversations, phone calls with the school, with the Local authority, with SENDiass (Parent Partnership at the time) desperate to make those three years easier for our child giving them access to education and the ability to surpass potential. The years of Statement of SEN annual reviews that until year 6 were pointless if not driven by us.
Thankfully everything changed when our chid was finally in a school setting that really understood autism. The Secondary ARP changed everything. Our story highlights the need for mandatory autism training for all who work with autistic children either directly or indirectly, from TAs to LA staff, across the board.
Which is exactly why I now do what o do. I am sick and tired of people who work with autistic children and young people having little to no training in autism at all. A half day or day course just doesn’t cut it if you work directly and closely with an autistic child or young person. I am still continuing to learn about autism so to imply expertise in autism when the person has had little to no real education in autism is wrong. Every single person, in all industries who works with an autistic child or young person in any way should be highly educated in autism.
Update:
Since lockdown, as a culmination of various autistic friends' input, books and talks I have come to the realisation, at 51, that I am Autistic.
www.autismadvocate.co.uk
The Great Divide
https://twitter.com/The_Autism_Dad/status/1074898722457190401
So the tweet above caused a bit of a twitter storm recently....
The Autism Dad posted a poll that said...
"Today’s Autism Poll asks a very important question, has being an Autism parent had an impact on your physical or emotional health?
Before answering this question, it’s important to that this isn’t a reflection on your child. We are simply talking about the long-term impact of stress. It’s a fact that Autism parenting is among the most stressful experiences a human can endure. Some families have it easier than others, but we all face great challenges.
This poll is designed to help you see what other Autism parents are experiencing. Please answer as honestly as possible, and don’t worry about what others will think because we’ve all been there."
https://www.theautismdad.com/2017/06/29/poll-has-being-an-autism-parent-had-an-impact-on-your-physical-or-emotional-health/?utm_source=twitter&utm_medium=social&utm_campaign=ReviveOldPostThae
The Autism Dad immediately received replies to his poll tweet. The problem was he really didn't like what was being said. Then he posted a poll he did previously which was virtually the same but with different wording..
"(Autism Poll) How often do you feel overwhelmed by all that being an Autism parent entails? Please Vote Please ReTweet :-) "(Autism Poll) How often do you feel overwhelmed by all that being an Autism parent entails? Please Vote Please ReTweet :-)"
clicking the link led to:
" Today’s poll is all about being overwhelmed. Please take a second and vote based in your experience. Please feel free to pass this along and help me gain more insight into the lives of Autism families. "
https://www.theautismdad.com/2016/09/27/daily-poll-how-often-do-you-feel-overwhelmed-by-all-that-being-an-autism-parent-entails-please-vote/?utm_source=twitter&utm_medium=social&utm_campaign=ReviveOldPosthis -
The problem many, including myself were having with the poll was the negative wording of it. There was no reason to imply that autistic children are some how a burden. By asking if having an autistic child "impacted your physical and mental health", or if a parent felt "overwhelmed" did just that. the wording implied hardship, burden, negative "impact".
What I found increasingly saddening as I watched the replies come in, was the number of parents, including The Autism Dad that swore up and down they loved their children, but somehow in every comment seem to blame autism. It was "autism" that made their lives hard, that gave them stress, that "impacted" their lives so badly. It was autism that tired them out....
The Autism Dad replies;
" This is about the physical and emotional impact that the additional stress and responsibility has on the actual parenting. I'm not blaming the child at all. Parenting is an action and I'm asking if the action is having an impact. No one blames the person with Autism. "
https://twitter.com/The_Autism_Dad/status/1075184775344914432
"Additional Stress"? And all along autistic people are saying over and over that the wording is negative and implies that the autistic child is a burden.
That autism itself is a burden.
The Autism Dad and many other parents of autistic children could not seem to understand that it is the lack of understanding autism and therefore the lack of support that is the "burden". That the support given by someone,
who understands autism, to an autistic child isn't "extra" or "more" but rather Just different. It is that lack of understanding and the following appropriate support at fault. It isn't autism. It isn't the child. As many autistic adults will tell you autism is certainly very much a part of their identity. In "attacking" autism, you attack autistic people. If stating how hard parenting an autistic child is, you are blaming autism. You are indirectly blaming a big part of the child's identity and therefor the child. It is that simple.
So, let's be honest here, globally, we don't know enough, let alone nationally. Our understanding of autism as we know it today wasn't established until the late 80's early 90's. http://stevesilberman.com/book/neurotribes/
That isn't that long ago.
Therefore, it isn't unreasonable to say that the global understanding of autism is still rather poor. If it we truly understood autism there would no longer be talks of "cures", children being literally abused in the quest to make them "normal". The entire anti-vaccination movement still pushing their agenda of antiscience woo wouldn't exist. There would be No question of debating vaccines and the fraudulent claim that they caused autism.
Instead the focus would be rightly so on support. The right support. Soon, that support would be commonplace. A true part of society, accepted completely instead of "extra" and "more".....
Many tweeted, including The Autism Dad, that "it was only words" and the point was " to remind parents to care for themselves". But that in my opinion was deflection. Words actually do matter when they are a part of an identity that society little understands and tends to demonise. Any google search of "autistic violence" will bring up the biases seen constantly. As many seem determined to link the two words. https://www.psychologytoday.com/gb/blog/abcs-child-psychiatry/201705/the-link-between-autism-and-violence-isn-t-autism
The point of "caring for themselves" can be said about all parents of all children. The poll was very specific. using the term "autism parent" made that very clear that this was directed at parents of autistic children or as they like to say, "my child with autism". The term "autism parent" also immediately brought up "autism warrior Mom" ............ and organisations like this :
who state :
"Are you ready to put the U and I in AUTISM…?
“I have witnessed first-hand how powerful early intervention can be. Speech, toileting, challenging behaviour all these areas can be transformed for your child with the right guidance and support.
It breaks my heart that whilst waiting lists get longer, precious time is being lost… early intervention needs to be accessed early!"http://www.autismparentempower.org/
Now of course self care and routines are necessary but I always cringe when I see the words "challenging behaviour" and hear my lecturer, autistic by the way, saying " who is it challenging? certainly not the one displaying it!" This organisation screams "normalisation" to me. To try and "normalise" an autistic child teaches them nothing but "masking", again as many autistic adults would explain. A quick Twitter search of the words shows a lot- https://twitter.com/search?q=%23autisticmasking&src=typd
But my point is, the divide between those parents who seem so driven to normalise their autistic children , or talk about how "hard autism is", or look for cures, or blame vaccines versus those parents, like myself who don't. But rather have learned and continue to learn about autism, who listen to those autistic adults, as well as their children and whom not only embrace them completely as they are and most importantly are not trying to change them, but change the world around them.
So I think it's time we focus on National autism understanding leading to global understanding. It's time to try and close the divide. Autism advocates like myself and Autistic advocates need to come together with parents to go forward... The only way that can and should happen is with #ActuallyAutistic people leading the way.....
A Gap Year.....
It was while replying to numerous emails about this year's annual review for my autistic teen's EHCP that it hit me.....
Why are autistic/neurodiverse young people made to jump through so many hoops? Why is it that something so simple and usual for a non Autistic/neurodiverse young person considered "unusual" for one who is?
My teen son is autistic and has hypermobile Ehlers Danlos (thanks to me, yeah I was diagnosed right after he was born). He was diagnosed autistic finally after the usual years long fight, at 4. So of course, to get ANY support at all these days a diagnosis is a must and what was the Statement of SEN, now Educational Health Care Plan is considered the golden ticket to that support.
So, these annual EHCP reviews have been a part of our lives for years. What was at first, confusing and stressful has become almost second nature to us now. Depending on the professionals involved, over the years the experience has been either like smacking our heads on the wall versus an almost pleasant experience, and believe me we have had both, unfortunately. I say "almost" because I really hope there is a day when "support" for autistic students is no longer seen as an "extra" but rather part of the regular standard school ethos of supporting all students. Then there would be no real need for an EHCP, but that is still a dream (insert harp music)....
But the reality is all educational settings up to colleges and universities, depend on the EHCP to be able to support their autistic students. In these days of financial hell, they have become imperative as schools lack the real funding they need. Having worked in a school for over 8 years and with autistic children and their families for over 15 now including training staff who work in schools with autistic students, I see it all the time. And it is getting worse.
So, here I am preparing for my son's last annual review at his mainstream secondary/6th form with an autism resourced provision. This review is to be a transitional review as it's his last year. Usually, when arranging the annual review it involves a few emails back and forth confirming dates and times. But this time, this time because my son dared to ask for something considered "unusual" we've had many more emails than usual.
It all started with a PATH meeting, which is basically a structured exploration in a 2 hour meeting of what the target person sees/wants for their future. It looks at what is happening now, what they want to happen in 6 months and then next year. My son was struggling, as I think all teens do, with the question what do you want to do in life. At 18, for example, I walked into a very large university after attending a very small private all girl catholic high school ( yep, born in america, live now in the uk) with a graduating class of about 30 girls, having no idea what I wanted to study so I picked English Lit and I literally walked out about 5 days later. I ended up doing an art and drama 2 year degree about a year later.
So, the fact that my son was able to:
sit through a 2 hour meeting that was focused entirely on him as he has experiences Exposure Anxiety (Donna Williams aka Polly Samuel reference and another blog for another time) his entire life.
actually answer the questions, consider possibilities and come out with a plan after, is amazing to me.
And what came out as a priority for him was, get ready, here comes the "unusual" request....
a gap year.
He wants a year off any education to explore other things as well as gain confidence and work on his exposure anxiety.
wow.
Not that I didn't think he was so insightful or knew himself as any almost 18 year old would. But the guts it took, to overcome the emotions that accompany what he was saying, was truly remarkable. But then, my children amaze me daily and always have. What helps of course is the fact that we had already explored a course to take at a local college that he was interested in and visited the college to see what support was offered. The college seems perfect. Attending it a year later shouldn't be a problem as far as the college was concerned.
So now, his request has become this "thing" that needs to be discussed. Why? well, "if he isn't in education, then he may lose his EHCP". What is even "better" is no one seems to know if that is a fact Nor do they seem to know if the EHCP was stopped, if it would it be re-instated for the support he would need to then continue on with education after the year's break. That seems to be regardless of already having pretty much confirmed the course, the college, and already initiating communication with a view to transition with the college. The college uses the EHCP to base their individual support package for the student.
This is all because my son wants what many others have, a gap year in education.... What other people consider normal for non autistic young people. Why is it suddenly a problem for an autistic young person? A non autistic person says they want a gap year and is often applauded for it. " go find yourself, grow up, see the world, work a little" and " it will be good for you", "explore other options".. but my child? "oh we need to look into what the LA will accept is the bare minimal requirement to keep his EHCP going" and " the LA may want to stop his EHCP if he is not attending school or college".
There is no standard national response to this request either. It seems to change from one LA to another. Someone I know had their child's EHCP taken away because they wanted a gap year before attending University! This is regardless of the autistic person working on their independence skills and volunteering in the exact area they will be studying at Uni. Another person I know had their EHCP closed because the LA had "nothing suitable" for this person to transfer into after 2 educational settings failed this person abysmally. This person has been at home since.
Now my son has no idea if he faces the same fate, losing his EHCP all because he dared to request a break and unsure if it would be reinstated. He has been in mainstream his entire life. The early years were very good, looking back. In the infants, he definitely received the best support they could offer. In fact, they were instrumental in pushing forward the assessment for diagnosis. He did really well. But then came the junior school and all that was good turned bad through pure ignorance. They really had no idea of autism and really should have. There was no excuse and their actions were abusive in my opinion. The school eventually changed radically as a result of going into special measures. Karma can be a real witch, I say, smiling.
Then came secondary and the 6th form he attends now with their autism resourced provision... He truly blossomed. He had grown more in the first year there then his entire jr years.
But now, after the changes in the testing and the pressures of 6th form, he's tired of education and just wants a break. A break he not only needs but deserves. It really feels like the LA bank on parents/carers/adults not understanding or having information...
So we have no idea what will happen... and if they say no?
then what????
How would that be fair? I think not and believe it could be considered discriminatory.
EDIT: June 2019. Gap year granted with EHCP in place 😁